A total of 26 participants were involved in the FGDs and the risk communication with cue cards, with equal numbers of men and women in both study communities. The participants’ ages ranged between 29 to 63 years. All women were housewives, and all the rural men were farmers. Few of the rural men had some primary school education. Most urban participants were from Ethiopian Orthodox Christian faith, and 65% of them had at least a secondary level education.
Although there were some differences in the views of urban and rural participants, five major themes were emerged during the analyses, namely, knowledge and awareness of heart disease, perception of risk or vulnerability to heart-related diseases, risk conception, communicating CVD risk, and health seeking intentions.
Knowledge and awareness regarding heart disease
HIV, malaria, tuberculosis, typhoid, and typhus fever were the main health problems mentioned by FGD participants in both rural and urban communities. Participants acknowledged that cardio-metabolic diseases such as CVDs (hypertension, heart disease), diabetes, kidney disease, and unintentional injuries were common in their communities. Participants agreed that most people in their communities lacked knowledge about these diseases and stated that the community was unaware of CVDs symptoms, and how to prevent or treat them. Participants from the rural communities indicated a general lack of knowledge about the heart, and possible heart-related disease.
This point was further reiterated by a participant from the urban community as follows:
“Many people [even in the urban community] do not even know where the heart is located let alone about heart diseases”. [male, urban].
They were also unsure whether treatment for CVDs is available at health facilities in their communities. Participants also agreed that, compared to HIV or other infectious diseases, little has been done by the government to raise community awareness about NCDs, particularly, heart-related disease and its possible effect in the communities.
Perception about the heart and risk of CVDs. Despite the low awareness of CVDs, participants in both study communities perceived the heart as an important organ of the body. Hence, the condition of the heart will certainly have serious either negative or positive consequences, depending on the situation, on the general health of an individual. A participant described this as follows:
“Our heart [health] is our [general] health, our kidney’s health. If our heart is healthy then our kidney will also be okay and the reverse is also true”. [female, rural]
She continued to note the connectedness of heart with other vital organs:
“Heart and kidney are not the same, but they are connected”. [female, rural]
Similarly, another participant expressed this assertion as follows:
“When the heart is diseased, as it is inside the body [stomach], it is harmful”. [female, rural]
Perceived risk, and vulnerability to heart-related diseases
Participants were asked ‘what they think might cause harm or danger to their hearts, in particular’. Several factors including actions and behaviours were mentioned by urban participants as the risk factors that could lead to CVDs. These included high intake of alcohol, tobacco smoking, chewing khat (Catha Edulis – a local stimulant plant found commonly in Ethiopia, Somalia, and East Africa), use of various illicit drugs, excess coffee intake, consumption of fatty food, and use of ‘unsafe’ cooking oil. Though most of the above CVDs risk factors were also mentioned in the rural FGDs, polluted air, contaminated water, and behaviours such as chewing of khat, alcohol abuse, and tobacco use were emphasized as the main CVDs risk factors.
The participants in the urban community also mentioned stress, anger, and disturbing noises as potential causes of CVDs. According to this participant, hearing unexpected and bad news about once relatives could also lead to the development of CVDs.
“I may develop heart diseases if I heard a shocking or bad news regarding my family or neighbours” [female, urban]
Interestingly, both urban and rural participants believed that intensive physical work and lifting heavy objects could also cause CVDs.
Perceived vulnerability to heart-related disease: many of the FGD participants did not think they could develop any heart-related disease at any possible time, and were therefore not worried about the risk of the disease. One participant in the rural community said:
…What kind of person ‘is he/she’ who looks forward to become ill in the future?” [female, rural]
She also emphasized caring for her heart only when she is diagnosed by a doctor of heart-related disease. She said,
“I will start caring for my heart when a doctor [in the future] tells me that I have a heart problem.” [female, rural]
Participant had alleged that anticipating a future illness (e.g., or guessing risk in the next five years what your CVDs risk would be) was like calling a bad luck on oneself.
“We don’t know what will happen in the future…..Only GOD knows what will happen to us.” [female, rural]
In addition, it was commonly believed that if this is the will of God (that is to be sick of heart disease) at any time in the future, even knowing and preparing early will not change the circumstance.
As indicated by this quote from a rural participant, people only perceived threat of sickness if they are sick themselves of any CVDs.
“People worry about their disease only when they get sick.” [female, rural]
This assertion was emphasized further this way. “When one is sick you look for help. But when one is not sick, you do not need to worry, as what God allows will come to you, anyway”.
This indicates that, the risk of getting sick of CVDs is not in our hands but is divine arrangement.
Considering the findings from both communities, a disease such as CVDs were considered to be harmful if it affects daily routine activity, make one bed-ridden, takes long time to recover, is incurable, and if it has the potential to result in death.
Risk Conception
With inherent cultural and religious beliefs related to disease occurrence and death, and low health literacy, conceptualizing CVDs risk and risk scores was not feasible, especially in rural areas. In one of the rural groups, the red colour was considered as depicting good health, referring to its resemblance with the colour of blood. On the other hand, one participant disagreed with using colour codes to depict CVD risk levels (or scores), as shown by this quote:
“I don’t need to understand anything including risk of disease. I have to admit my health status and live with the disease”. [female, rural]
Communicating CVD risk
The findings from the health risk communication semi-structured interview indicated that there were mixed views on the use of communication cue card options such as bar graphs, thermometers, and colours for communicating CVD risk. Most participants in both the rural and urban communities considered the red colour, including inside a thermometer, to signify a very high risk, a danger sign, or a life-threatening condition, while few participants suggested using black, yellow or white colors to represent high risk. According to some participants, a yellow color indicates a serious condition, or jaundice, or liver disease, while a white colour was considered as ‘no blood’ signifying an anemic condition. Similarly, most participants selected the colour green to represent lower risk, while a few preferred yellow and white colors.
Most of the participants, especially in the urban site preferred the use of graphs and colours in CVD risk communication (with visual aids), but their responses differed when a risk was communicated in the form of a bar graph, thermometer, or coloured thermometer. Most participants in the urban setting (compared to the rural ones) had correctly reported that a higher count (score) in the bar chart (and thermometer) meant a higher risk. However, a few considered a higher score in the bar graph to represent a lower risk or better health.
The addition of textual explanation to the graphic presentation of risk, bar chart or gauged and colored thermometers was found to increase the comprehension of the risk scoring. This was particularly important as most of the female participants were illiterate. According to these participants, the explanation would make it easier to ask assistance from literate family members. How and by whom the risk was communicated was also found to be an important factor for the message acceptance and its subsequent preventive action in this group of participants. An urban participant showed how he questioned the experience of healthcare providers and rejected the advice by saying:
“I was told that I have heart disease. But I was not convinced of my case, so I was afraid to take the drugs prescribed for me”. [male, urban]
Another participant stated that:
“If a healthcare provider told me that my condition is hopeless and it is too late for me, there is no point for me to act on it”. [male, urban]
In the rural community, the use of testimony from people who suffered and recovered from CVDs was a preferred health education strategy rather than dictating to people the expected behaviours on issues related to a healthy lifestyle, such as eating right, avoiding alcohol and tobacco, exercising regularly, and complying with treatment. In general, urban participants recommended that community health education and promotion of CVDs risk reduction using practical demonstrations and examples, including graphs, colors, percentages, and time frames (e.g., five-year risk). Other useful approaches mentioned by participants included mass media campaigns and the use of trained peer educators who can teach the community in normal social gatherings like coffee ceremonies and “idir” (burial associations) meetings. As a trusted source of health information, engaging community health workers and health care professionals in such meetings was also mentioned to enhance the desired behaviour change.
“…as to me, health education messages will be more acceptable when it comes from an experienced healthcare professional. They are more trusted in the community and can discuss the problem in more friendly way and at personal level” [male, urban]
Health seeking behaviour and treatment intentions
In the rural communities, mainly, participants had indicated that people often seek the services of traditional or religious healers for various health problems, and not specifically for heart-related health problems. Some urban male participants had indicated that they or others have visited traditional or religious healers to address anomalies including heart-related problems. According to these participants, people opt to religious healing looking for a radical ‘miraculous ‘cure not just disease management with a lifelong treatment. It is also related to the participants’ belief that heart diseases are incurable. Some urban male participants went ahead to also mention a specific traditional healing practice undertaken to address suspected heart-related health problems called ‘Birchiko Neteka’.
“I never encountered a person who suffered from heart diseases and seek care at health facilities. But most people complain about heart ‘weakness’ and sinking down of the heart. I knew people who visited traditional healers (bone settler or Wegesha) for these complaints- to do Birchiko Neteka.” [female, rural]
According to the participants, the ‘Birchiko Neteka’ practice involves, first, the traditional healer taking small cotton socked in alcohol, burn it with fire over the affected area on the patient’s chest wall. Then the healer will immediately cover the flame by a glass, allowing the flame to be extinguished, but the glass be attached with the chest wall. Finally, the healer pulls the glass from the patient’s chest wall. This is believed that, as the glass is pull off, the heart problem will get out of the body.
Participants also indicated their lack of empowerment to assess their CVDs risk since it is impossible to forecast ones’ future, including their health. This finding could be an important influence of health-seeking intentions in this population.
A follow up study (citizen science mobile survey) was commissioned to ascertain if community members would be willing to attend a local clinic to access care if screened and referred for CVDs care. Findings from this new study will give added information on health seeking and contextual issues around it.
Barriers to care seeking for cardiovascular disease
According to participants involved in these FGDs, the harmfulness of a disease was gauged by its potential to cause disability, paralysis, make a person bed ridden or lead to death. As people could give greater attention to diseases with such serious consequences, CVDs prevention interventions in these communities should include descriptions of their potential complications. Generally, CVDs were considered harmful by the participants of this FGDs. However, in the urban setting, participants reported that many people affected by CVDs often find it difficult to accept their diagnosis, disclose their status to others as well as seek appropriate medical care. They fear and are ashamed by the labeling effect of being diagnosed with a lifelong disease, as shown in the following quote:
“Diagnosis with these diseases will make the person incomplete”. [male, urban]
To these participants, a person with chronic disease like CVDs and being on lifelong medication is not as healthy as a person without the disease, irrespective of the presence or absence of symptoms. According to them, a person with such chronic disease cannot be considered full healthy as he/she needs to take medication continuously to remain healthy or restore to a healthy state. Accepting diagnose of heart disease was therefore consider as a stigma in the communities.
In addition, people often do not know the common symptoms of CVDs and are hence unable to seek medical care. Even for those who may recognize the common symptoms of CVDs, care was thought to be both physically and financially inaccessible. Therefore, these participants often looked for an alternative source of care, such as religious, or traditional healing.