Kenyan youth’s understanding of cancer and cancer risk: a qualitative study

ABSTRACT

Cancer incidence and mortality continues to rise worldwide including in Kenya and Kenyan youth who take part in cancer risk behaviour increase their chances of getting the disease in future. Despite this awareness, little is known about how Kenyan youth conceptualize cancer and cancer risk. Therefore, using a qualitative research study approach, we explored Kenyan youth’s understanding of cancer and cancer risk. Fifty-three youth between ages 12–19 years were engaged through individual interviews and focus group discussions. Using qualitative analysis approaches, we arrived at youth’s conceptualization of cancer and cancer risk. In youth’s conceptualization of cancer, their descriptions are grouped into two themes: ‘Cancer as a mysterious illness’ and ‘Lay representations using metaphors’. In their conceptualization of cancer risk, youth described cancer risk in ways that are grouped as ‘Cancer risk as lifestyle factors’ and ‘The process of understanding risk’. Our study is the first of its kind to be conducted in Kenya and we present critical findings and recommendations for cancer and cancer risk awareness, health education, and promotion for this population.

KEYWORDS:

• Youth
• cancer
• cancer risk
• qualitative
• Kenya

Introduction

All cancers, taken together, are the leading cause of death globally, with about 10 million deaths in 2020 (World Health Organization 2020). In Kenya, cancer is the third leading cause of death with over 40,000 new cases and 28,000 deaths every year (Ministry of Health 2017). People, including Kenyan youth can develop cancer after several years of exposure to cancer risk factors (World Health Organization 2020). Youth participate in risk taking behaviours because of a complex interplay of biological, psychological, or sociological reasons (Woodgate, Safipour, and Tailor 2014; France 2000; Kobus 2003). For instance, some Kenyan youth participate in risky sexual relations because of cultural practices (e.g. widow inheritance) (Juma et al. 2014). Despite this awareness, we know very little about Kenyan youth’s understanding of cancer and cancer risk.

Kenyan youth live in a country with over 55 million people, often speak English and Kiswahili and go through a formal educational system. Kenya has a devolved healthcare system with a public and private funded structure and a universal health insurance program for basic healthcare (Masaba et al. 2020). Patients from rural locations often experience poor access to healthcare services because major health centres are in urban areas.

Research on youth’s perspectives of cancer and cancer risk has been on the increase with much of the work involving youth with cancer or cancer survivors in urban locations in developed nations (Bood et al. 2022; Mooney-Somers, Lewis, and Kerridge 2016). Limited research focuses on healthy youth (without cancer) from urban and rural location in less developed countries (Mosavel and El-Shaarawi 2007; Mosavel, Simon, and Ahmed 2010). In studies where healthy youth describe cancer and cancer risk, they use metaphors, drawings, pictures, and emotions in their descriptions (Woodgate and Busolo 2017; Mosavel and El-Shaarawi 2007; Mosavel, Simon, and Ahmed 2010). Research involving healthy Kenyan youth that presents their perspectives of cancer and cancer risk is critically needed to inform effective cancer preventive programs. Accordingly, we conducted a qualitative study to arrive at a detailed picture of Kenyan youth’s understanding of cancer and cancer risk as a foundation for future cancer education and health promotion programming.

We used the Health Belief Model (HBM) and Symbolic Interactionism (SI) to guide our study. Studies involving Kenyan women have used the HBM and found participants perspectives focused on their perceived susceptibility, severity, barriers, and cues to action constructs. Participants views did not focus on perceived benefits of preventative actions and self-efficacy as much because of limited knowledge of cancer preventative plans (Kisiangani et al. 2018; Muthoni and Miller 2010; Ngugi et al. 2012).

We designed data collection guides based on the HBM and SI and explored youth’s perspectives within their social contexts (Lune and Berg 2017). The HBM theorizes that individuals engage in disease preventative behaviour because of their perceptions of the illness and illness risk (e.g. cancer and cancer risk) (Rosenstock 1966), while SI theorizes that people act on phenomena (including cancer and risk factors) because of the meanings they place on those phenomena and derive meanings from their social interactions (Benzies and Allen 2008; Blumer 1969).

Materials and methods

We used the qualitative research study design (Kim, Sefcik, and Bradway 2017; Neergaard et al. 2009). Accordingly, we recruited youth between ages 12 to 19 years by purposive sampling for in-depth study (Lune and Berg 2017). We conducted the study as part of the primary researcher’s doctoral research. We established relations with the school principals at the formulation stages of the study and obtained relevant permissions before data collection. The first author spent time at the schools to create rapport, gain trust and establish relations. In the recruitment process, we made announcements at participating schools and shared study information with interested participants and their guardians.

Youth who were proficient in English or Kiswahili and attended the rural or urban schools were included in the study. Prior to data collection, ethical approval was obtained from the University of Manitoba Education and Nursing Research Ethics Board, the Kenyatta National Hospital-University of Nairobi Ethics and Research Committee, and the National Council of Science and Technology. Informed consent was obtained from youth who were 18 years or older while youth who were younger than 18 years old provided assent in addition to consent from their guardians.

Data was collected over a five-month period using a demographic form, individual interviews, and focus groups. The demographic form was used to gather youth’s descriptive information (e.g. age) (see appendix) while interviews were used to examine their perspectives. Thirty-three youth participated in digitally recorded interviews in English (N = 31) and Kiswahili (N = 2). The interviews were conducted by the first author who is fluent in both languages. Each youth took part in one to three interviews that were 60 to 156 minutes long. In the first interview, we asked questions such as ‘When you hear the word cancer, what comes to your mind?’ (Table 3). The second and third interviews followed up on questions arising from the first and second interviews. The use of serial interviews and open-ended probes allowed youth to provide in-depth information and elaborate on their perspectives and experiences.

Table 3. Interview questions.

Interview Questions
(1) Please tell me about yourself
(2) When you hear the word ‘cancer’ what comes to your mind? Please tell me more.
(3) How do people get cancer? Please tell me more.
(4) What do you think are some of the things teenagers do that increase or decrease their chances of getting cancer? Please tell me more.
(5) What do you think are some of the things that other people do that you think can increase or decrease the chances of teenagers getting cancer? Please tell me more.
(7) Is it possible to avoid cancer? How or why not?
(8) What happens when a person gets cancer? Please tell me more.
(9) What are some ‘things’ about cancer that you have heard or been told about? Please tell me more.
(10) What do you think about some of the messages about cancer? What do the messages mean to you? Please tell me more.
(11) If you were asked to develop your own cancer messages for teenagers, what would you want to tell them? Please tell me more.
(12) If you wanted to learn more about cancer, what sort of things would you do? Please tell me more.
(13) Is there anything else that you would like to tell me about cancer, or how people get the disease?
(14) Are there any questions that I should be asking teenagers that I did not ask in this interview?

During one of the interviews, one participant became emotional and was supported by the interviewer. The interviewer stopped the session, asked if they were okay, offered to reschedule the interview or skip questions the participant was not comfortable with. The participant chose to proceed with the interview despite being overwhelmed by emotions. The interviewer provided information to access counselling services and checked on their wellbeing afterwards.

After completing the individual interviews, three focus groups were conducted to seek for new knowledge from youth in a collective and social context (Lune and Berg 2017). Twenty youth who had not taken part in the individual interviews participated in focus groups according to their age groups and location: 12–13-year olds (urban), 15–16-year olds (rural), and 17–19-year olds (rural). No 14-year olds were available to participate because they were preparing for a national examination. At the focus groups we asked questions such as ‘what are some of the things that teenagers do that can increase or reduce their chances of getting cancer?’ The questions were followed by probes (Table 4). Each focus group took between 120–180 minutes to complete. Upon completion of every interview, field notes were completed. Information about the settings, participants’ communication, interviewer’s reflections were documented (Lune and Berg 2017).

Table 4. Focus group questions.

Focus group questions.
(1) Let each of us introduce ourselves and name one thing that you like in your life.
(2) When you hear the word ‘cancer’ what comes to your mind? Please tell me more.
(3) How do people get cancer? Please tell me more.
(4) What do you think are some of the things teenagers do that increase or decrease their chances of getting cancer? Please tell me more.
(5) What do you think are some of the things that other people do that you think can increase or decrease the chances of teenagers getting cancer? Please tell me more.
(6) Is it possible to avoid cancer? How or why not?
(7) What happens when a person gets cancer? Please tell me more.
(8) What are some ‘things’ about cancer that you have heard or been told about? Please tell me more.
(9) What do you think about some of the messages about cancer? What do the messages mean to you? Please tell me more.
(10) If you were asked to develop your own cancer messages for teenagers, what would you want to tell them? Please tell me more.
(11) If you wanted to learn more about cancer, what sort of things would you do? Please tell me more.
(12) Is there anything else that you would like to tell me about cancer, or how people get the disease?
(13) Are there any questions that I should be asking teenagers that I did not ask in this focus group?

Data analysis

Data analysis occurred concurrently with data collection. Demographic data analysis involved descriptive statistics of means and percentages. Upon completion of every interview, digital recordings were transcribed verbatim. Data from interviews that were conducted in Kiswahili were translated to English by the first author and included in the analysis. Both authors were involved in the analysis process which involved reading transcripts several times to get a sense of the data and emerging findings (LeCompte and Schensul 2010). Statements that stood out in the scripts were highlighted and assigned a code. A codebook was developed with an initial set of scripts, the codes were discussed, then a revised codebook was used to code the remaining scripts. The codes were combined into categories then further into themes using a process of comparing and contrasting. Characteristics of the codes and relationships between categories and participants’ demographic characteristics were examined to illuminate differences in the categories and themes. The researchers discussed the codes, categories, and themes but did not calculate the interrater reliability. To ensure rigor, multiple data collection methods were used and an extended period of time was spent with the data to arrive at study findings (Graneheim, Lindgren, and Lundman 2017).

Results

Participants’ characteristics

The sample included 53 youth: 26 (49%) males and 27 (51%) females between ages 12 and 19 (Mean 15.4) (Table 1). Thirty-two (60%) youth had lived in rural areas while 21 (40%) had resided in urban places. Twenty-one (40%) of the youth had a history of cancer either by a close relative or friend.

Table 1. Characteristics of study participants.

Characteristics	n	Percentage
Age group (years)
12–13	18	34.0
14–16	15	28.3
17–19	20	37.7
Sex
Male	26	49.1
Female	27	51.0
Place of residence
Urban	21	39.6
Rural	32	60.4
Family history of cancer
Yes	21	39.6
No	32	60.4

Thematic findings are presented as follows: perspectives of cancer and perspectives of cancer risk.

Perspectives of cancer

Youth perceived cancer in two ways: 1) Cancer as a mysterious illness and 2) Lay representations using metaphors. We present some quotes in the following paragraphs and others on Table 2.

Table 2. Themes, sub-themes and illustrative quotes.

Theme	Sub-theme	Quote #	Illustrative quotes
Cancer as a mysterious illness	Cancer is complicated and baffling	#1	People with cancer look perfectly fine but my aunt started losing a lot of weight. She became thin, and her skin became kind of pale. She lost all of her hair. It started like falling off. (12-year-old Male)
	Cancer is dangerous (it can lead to death).	#2	Cancer to me is a dangerous disease which has cells which subdivide uncontrollably and can destroy your body tissues. What I mean is that it starts at a young stage and if you do not see the doctor immediately, it can have severe effects on you as a person. (13-year-old female)
	Cancer is costly to treat	#3	Some people with cancer lose hope because they do not get financial help from their friends or relatives. If they go to different organizations to get let us say a loan, their requests are usually turned down. On the other hand, hospitals ask people to pay insurmountable amounts of money. Sometimes people have to sell all their possessions including businesses so that they can get the money. At times parents go to the point of selling their clothes and utensils to get money to help their children with cancer. (17-year-old female)
	Cancer created rejection, and shame	#4	It is very sad because when you have cancer and then your friends know that you have the disease, some of them will reject you. Some might stay with you, but most of them will not be with you, which will be difficult. (13-year-old female)
		#5	If I have cancer, it will be difficult for me to share the information with others. I would ask myself what others would say about me and how they would relate with me. If someone is infected, he or she she will find it difficult to share the information with others. (17-year-old female)
	Cancer is an emotional illness.	#6	I am always afraid to talk about that disease because maybe one day I will get it. (16-year-old female)
Lay representations using metaphors.	Battle metaphor	#7	Interviewer: When you hear the wordcancer what comes to yourmind? Participant: Sickness. Cancer is a killer disease. (13-year-old female)
		#8 #9	I feel like cancer is like a thief who is going to strangle you for like a whole year. I mean that first. First, it starts strangling you slowly and when you already get the scientist to struggle slowly, like cancer, it takes some time to develop, and the last time it is very painful and disturbs you always. (12-year-old male) The red blood cells and white blood cells keep on fighting against each other instead of helping each other cure the body. If they keep fighting, that means your immune system will first go down and the body cannot help itself. If you do not get treated, you will die. (12-year-old female)
		#10	The first thing I notice when somebody is in hospital with cancer, I think about death or life. One of those two, it is not in the middle, it is never in the middle, its death or survival. (13-year-old female)
		#11	Cancer affected him through his private parts. So the doctor told him that they had to cut that part so that he could survive. The doctor told him that he could not survive until the part was cut. The part was not cut and he died just like that. (16-year-old female)
	Cancer as a living thing metaphor	#12	When you have cancer, you may not know because it usually starts at a primary stage, a smaller stage. You may not know that you have cancer but in future, as you grow up, the stages become more active and have a greater effect on your body. (13-year-old female)
		#13	I first heard of cancer when I was in Class seven [grade seven]. As we were doing English examination, we used to be given some case studies to read and answer questions. So that time we were brought a case study about cancer, but they described it as an animal that destroys everything. So deep in my heart, I used to say I want to meet this animal. When I came to know it [cancer] is a disease I was shocked. (16-year-old female)
	Cancer as death	#14 #15 #16	When I hear the word cancer, to me its death. (13-year-old female) Cancer kills many people. Especially innocent children. It really kills them. (13-year-old female) After her death, I felt awful. It felt like I was alone. I felt devastated, like I was in a big space and yet all alone and with no one to help me. (12-year-old female)
		#17	The first thing you usually hear about cancer is death. When I heard that you can prevent cancer, I was relieved because cancer is not only death. When I hear cancer, I also hear of preventing it or being cured, yeah. (12-year-old female)
		#18	You do not need to go to the hospital because many of the people who have cancer tell me that they are dying. These people tell you negative messages that make it so difficult for you. If these people tell me that I cannot seek medical attention from the hospital, it is like they are telling me that I am dying. If that is the case, why am I going to the hospital to seek attention? I might as well stay at home and wait for my last day to come. (17-year old female)
		#19	I sometimes know there is a cure. God gives you medicine which you need to take or you will die the way you are. God has given you a vaccine and a way of preventing cancer, so that you do not get it. However, if you disobey God, that will be your decision and there will be a consequence. The consequences is that you will die. (12-year-old male)
Cancer risk as lifestyle factors	Smoking Forty-nine youth perceived cigarette smoking as a cancer risk factor	#20	Smoking goes into your lungs, and you get cancer of the lungs. If you are sitting near somebody who is smoking in your face, you need to get away from there and go and sit somewhere else. Because maybe you are inhaling air, by the time that air, or that smoke that come from the cigarettes enters your body, it might start increasing your chances of getting cancer. (12-year-old male)
	Unhealthy eating Forty-seven youth felt eating an unhealthy diet could increase one’s lifetime risk for cancer	#21	Because at first, my mum told me that the doctor told her that If you start eating a lot of fats and sugars you will get cancer. Therefore, every day when I see children eating sweets and blue band fats, oily chips, it makes me think that they risk, they increase their chances of getting cancer. (12-year-old male)
	Alcohol consumption Forty-two youth perceived alcohol consumption as a cancer risk factor.	#22	Interviewer: How about drinking alcohol, do you think it can increase or reduce your chances of getting cancer? Participant: Alcohol itself it can increaseat a high rate. Yeah. Interviewer: Why do you think so? Participant: Because alcohol has got some chemicals. (15-year-old male)
	Sun exposure Thirty-seven youth felt exposure to sun rays could increase their chances of getting skin cancer in future.	#23	Participant: You know there are albinosthat have to cover themselvesto prevent them from directsunlight because of gettingcancer. Researcher: What about those that are notalbinos. Participant: They just say that it cannotaffect them; it cannot affect theblack people. (17-year-oldfemale)
	Pollution Thirty-eight youth believed environmental factors including pollution were cancer risk factors.	#24	Factories, cars, dust, the smoke that comes from chimneys in industries and cars exhaust fumes may enter the body of a non-smoker and the non-smoker may get cancer. (12-year-old male)
Process of risk perception	Managing cancer risk information	#25	Sometimes they think that what the other people are saying is not true or sometimes they say drugs are good, but they are not good. (12-year-old male)
		#26	Alcohol is usually advertised but I cannot remember the name. You find that on the advertised bottle, there is a flying horse. Therefore, someone will want to know what is happening. They will ask, ‘If I take this alcohol, will I fly like this horse’. The person will take the alcohol in order to know what will happen or to find out what the effect would be. (17-year-old female)
		#27	Participant: Those messages tell people tostop eating foods that are nothealthy and to exercise so thatthey cannot get cancer … Researcher: Do you think teenagers canlisten to such messages? Participant: Some of them may but some ofthem do not care about them. Researcher: What do you mean? Participant: There are teenagers like uswho are interested but some arenot. So the ones who are notinterested feel that in future theywill never get cancer, yet anything can happen. (13-year-old female)
	Benefits-cost of the cancer risk	#28 #29	Participant: For me I can say like theteenagers, let me say likenowadays you will find a classsix girl being involved in sexbecause of money. Interviewer: What do you mean by that? Participant: One day I was approached bya boy in this school to have sexwith him. He promised to giveme five thousand shillings. It ispossible that many students cantake part in such activities whenthey are told that they will getmoney. (17-year-old female) Your friends may start staying away from you because you are becoming fat, you are wearing big clothes. When you walk on the road, your friends may become embarrassed, so when you eat junk food, it cannot really help you. (13-year-old female)
		#30	They were saying that beer is not good because once you start taking it bit by bit you get addicted and it is so hard to stop. When you try to stop you might die. (13-year-old female)

Note: Main emergent themes, subthemes, and additional illustrative quotes from interviews and focus group discussions on Kenyan youth’s understanding of cancer and cancer risk.

Cancer as a mysterious illness

‘Cancer as a mysterious illness’ refers to youth’s perspectives of cancer as a strange disease. Thirteen-year-olds and those with a history of cancer in their family or friends held these perspectives. Youth found cancer to be very different from the nature of other diseases and used words like ‘weird’ to symbolize its mysteriousness. As a mysterious illness, 1) cancer is complicated and baffling, 2) dangerous (it can lead to death), 3) costly to treat, 4) leads to rejection and shame, and 5) an emotional illness.

First, youth felt cancer is complicated and baffling because it presents in different types such as ‘skin cancer’, or ‘lung cancer’, yet it affects the same body. Thirteen youth felt that cancer was an infectious disease while others (n = 3) believed cancer was complicated because it affects various parts of the body and sometimes presents with incapacitating signs and symptoms. When the signs and symptoms were absent, youth felt the person was healthy. (Quote #1, Table 2).

The second attribute: ‘cancer is dangerous (it can lead to death)’ was used to symbolize the severity of the disease and the fact that it could lead to death. Because of being dangerous, youth felt cancer is very difficult to treat and requires urgent and aggressive treatment. (Quote #2, Table 2).

For the third attribute: youth perceived cancer as ‘costly to treat’. People with cancer and their families needed to pay for their treatment, hospitalizations, transportation, and medication. Youth who attended the rural school were more concerned with the costs partly because they lived far from cancer treatment centres. (Quote #3, Table 2).

The fourth attribute was that cancer created rejection and shame. When someone had cancer, they were rejected by friends. In the same manner, the person with cancer felt uncomfortable to interact with people without the disease. (Quote #4 and #5, Table 2).

Youth expressed emotions related to cancer as the fifth attribute. Over two thirds of them felt ‘scared’, ‘sad’, or ‘shocked.’ Fear was the most talked about emotion whereby youth were afraid to talk about cancer and its effect. (Quote #6, Table 2). Additionally, two students were emotional and cried as they recounted painful experiences of living and losing their loved ones with cancer.

Lay representations using metaphors

‘Lay representations using metaphors’ refers to the ideas, thoughts, and meanings attached to cancer and how youth expressed them using metaphors in their culture and social relations. Youth articulated their lay understanding of cancer using battle, living organism, and death metaphors.

Battle metaphor

Youth described cancer using words that are common in battlegrounds such as ‘attack’, ‘fight’, and ‘destroy’. Although cancer is a disease, youth portrayed it as an enemy that launched an attack on the body. (Quote #7 and #8, Table 2). Twenty-one of these youth had a history of cancer in their family or friends.

In their perspectives, cancer somehow confuses healthy cells such that instead of performing their normal functions in the body, they turn to each other and ‘fight’. When cancer causes the cells to fight; one needs an equally forceful counter-attack: immediate medical attention. (Quote #9, Table 2).

In the same way that there are casualties at every war, overcoming cancer was equated with being a survivor. Survival meant being fortunate enough to escape death. Youth associated survival with one’s socioeconomic status where the affluent were more likely to pay for their treatment and survive. (Quote #10 and #11, Table 2).

Cancer as a living organism: cells eating other cells

On ‘cancer as a living organism: cells eating other cells’, youth described cancer as a living organism using metaphors. Youth referred to the disease as a ‘a lump’, or ‘tumour’, that could ‘move fast and develop in a hurry’. Youth compared cancer to a process of cells ‘eating’ other cell, which could be likened to living organisms preying on others.

Other youth associated progression of the disease to growth and activity. Like a living organism, cancer was believed to be dormant in its early stages but ‘more active’ when it was at an advanced stage. Once cancer had developed, treatment was required to contain it. If not, cancer as a living organism could grow, spread, and have greater effect on the body. (Quote #12, Table 2).

Youth’s perspectives were shaped by educational sessions where they interacted with teachers and learned from them. During the classes, teachers described cancer using living thing metaphors such as describing cancer as an animal which students took literally. (Quote #13, Table 2).

Cancer as death

Over two-thirds of the youth perceived cancer as life limiting and as such described it using metaphors of death. Thirteen-year-olds from the urban school were most likely (n = 10) to describe cancer using the death metaphor. In their perspectives, death was a sad, scary, and an unwanted result of having cancer. Cancer was perceived as death itself. (Quote #14, Table 2).

To other youth, cancer was the initiator of death (a killer) and did not spare anyone, not even innocent children. (Quote #15, Table 2). Other youth felt that death came as a result of having cancer (cancer was a death sentence rather than death itself).

Youth believed that people do not usually survive when they are diagnosed with cancer. They die. Death created a sense of emptiness and loneliness for the family that was left behind. Death took away all the joys and pleasures of life. (Quote #16, Table 2).

Youth with experiences of living with family members/friends with cancer went beyond sharing their perceptions of the disease using death metaphors. They questioned the need to seek treatment when death was imminent. (Quote #17, Table 2). These youth felt that if they were diagnosed with cancer, it would be pointless to seek treatment because they would still die. (Quote #18, Table 2).

Beyond associating cancer with death, youth believed God could affect cancer outcomes and would not let people get the disease. In their belief, it was the nature of God to protect people from getting cancer. When an 18-year-old female participant was asked whether she thought she could get cancer in future, she stated, ‘I pray God not to’ which was perhaps an indication that God had some form of power or influence that could determine whether someone gets cancer or not.

God would not let anybody get cancer that easily. (12-year-old male)

Youth believed God could use special approaches that needed the person at risk to be obedient and follow. Following God’s plan could prevent death (Quote #19, Table 2).

Perspectives of cancer risk

Youth perceived cancer risk in ways that are described by two themes: (1) cancer risk as lifestyle behaviours and (2) the process of understanding risk.

Cancer risk as lifestyle behaviours

Youth perceived cancer risk as involving oneself in lifestyle behaviour that could increase their chances of getting cancer in future (risk factors). The cancer risk factors youth talked about include cigarette smoking, (Quote #20, Table 2), unhealthy diet (such as fats and sugars) (quote #21, Table 2), alcohol consumption (quote #22, Table 2) exposure to sun rays, and pollution (quote #23 and #24, Table 2), physical inactivity and engaging in risky sexual relations. Furthermore, 37 youth associated cancer risk to myths that included low immunity, mixing of body fluids, and evil spirits but considered cultural or home-prepared meals and muratina (local alcoholic brew) as healthy options.

Process of understanding risk

Youth talked about how they made sense of cancer risk. The process involved examining cancer risk factors, what they thought of taking part in cancer risk behaviour and the justifications for their actions. Youth’s perspectives are grouped into sub-themes of ‘managing cancer risk information’ and ‘benefits-costs of the cancer risk’.

Managing cancer risk information

On the subtheme of ‘managing cancer risk information’, youth evaluated what other people, the media, or Bible said about cancer risk behaviour and determined whether the information was true or not. (Quote #25, Table 2). Youth went as far as taking part in risk behaviour with the intention of finding out whether the advertised information was true or not. (Quote #26, Table 2).

Other youth managed cancer risk information by suppressing their knowledge of cancer risk behaviour. Youth turned a blind eye to what they knew about risk or cancer risk factors and the detrimental health effects of taking part in risk behaviour. A 16-year-old female elaborated what it meant to suppress information by mentioning:

Some of them smoke and yet they know that there are diseases like lung cancer. They keep on smoking.

However, youth were cognizant that downplaying perceived risk was not good for them and could increase their risk for cancer. Therefore, to feel less susceptible to cancer risk, youth associated their perceived low risk to more careful behaviour.

Managing information also took the form of paying less attention to cancer risk messages. Youth evaluated information depending on whether they felt susceptible to getting cancer in future and talked about listening to information about cancer risk factors and what their peers thought about those messages. Youth appreciated messages that cautioned them against engaging in risk behaviour and expressed hope that those who were not aware would learn. (Quote #27, Table 2).

Benefits-cost of the cancer risk

‘Benefits-cost of the cancer risk’ refers to how youth rationalised risk by expressing the immediate pleasures of engaging in risk behaviour and disregarding the long-term harmful effects. In another way, benefit was approached as necessary and the cost did not appear to count as much. Youth rationalised and made comparisons about the riskiness of their behaviour by comparing short-term benefits versus long-term negative consequences.

When youth thought and talked about the benefits of engaging in risk behaviour, they described the behaviours as okay, fun, and ‘enjoyable’. Sometimes they benefitted by getting paid to participate in risk behaviour. For instance, one youth talked about her experience of being approached by a fellow youth to participate in paid sex. While she refused, she felt some of her peers might give in to the behavior because of monetary reasons. (Quote #28, Table 2).

Despite the short-term benefits, youth resisted the urge to engage in risk behaviour because of their future health, shame, and religious beliefs. One youth gave an example of gaining weight because of eating unhealthy foods and how that could be embarrassing. The embarrassment deterred her from unhealthy eating. (Quote #29, Table 2). Another way of evaluating benefit versus cost of taking part in risk behaviour was about addiction. Youth felt their peers took part in cancer risk behaviour because they were addicted (felt the need) rather than for pleasure. (Quote #30, Table 2).

Discussion

In the wake increasing cancer incidence and mortality in Kenya, our study provides important findings that could be critical for better cancer prevention measures. Youth’s perspectives of cancer as a mysterious illness reflects the grim consequences of getting the disease in their social-cultural context. In Kenya, cancer is usually diagnosed at advanced stages, the cost of care is extremely high, with normally abysmal treatment outcomes (Ministry of Health 2017). For people who live in rural locations, their experiences are worse. These people live far from cancer screening and treatment centres and bear a greater burden of cost (Sayed et al. 2019). These poor outcomes of getting cancer emphasize the need for better cancer control measures that focus on creating more awareness on cancer outcomes, chances of survival, and developing cost effective prevention programs. These initiatives could start from schools and communities where youth learn and spend considerable time. Additionally, cancer control advocates, policy makers, and leaders in government need to be continuously engaged to ensure government’s budgets prioritise cancer control (Busolo and Woodgate 2014).

Youth perceived cancer as a disease that generated fear which could have important implications for cancer care and prevention (Hauser and Schwarz 2015; Mooney-Somers, Lewis, and Kerridge 2016). Fear towards cancer can lead to stigma and distancing oneself from people with the disease while fear towards cancer preventive strategies can lead to low participation (Consedine et al. 2004). Youth who express fear towards the disease may need to know that some cancers can be treated and may need support to manage their emotions and cope with the illness. The media and health educators may need to relay cancer prevention messages that promote controllable risk factors instead of propagating fear (Vrinten et al. 2017).

Kenyan youth’s description of cancer using metaphors compliments emerging work in this area (Woodgate and Busolo 2017; Harrington 2012; Mooney-Somers, Lewis, and Kerridge 2016) and need to be used with caution. Metaphors that portray cancer as an enemy or death sentence can generate fear and have detrimental effects on prevention (Vrinten et al. 2017). Therefore, in developing cancer education programs for youth in Kenya, educators need to provide accurate information about the disease.

Youth perceived themselves as susceptible to cancer and suggested that cancer risk is determined by the type and frequency of participating in cancer risk behaviour which is consistent with HBM’s perceived susceptibility construct (Rosenstock 1966). While youth were cognizant of cancer risk factors, some of them referred to myths, which calls for education on cancer risk factors. Furthermore, youth culture and resources (or lack of) shaped their perceptions and subsequent actions in ways that transcend the HBM. Coming from a highly religious background, youth were mindful of how their behaviours would reflect their religious values. Therefore, in promoting cancer prevention efforts with Kenyan youth, interventions that incorporate religious and cultural values would be more meaningful.

Another way that youth rationalised risk was by evaluating the benefits versus the costs of cancer risk-taking behaviour. According to Slovic (2010), youth give limited conscious thought to risk. For instance, although youth may be aware that smoking increases cancer risk, those who smoke may have limited and sometimes unrealistic awareness of the cancer risk and consequences of smoking. To guide Kenyan youth towards healthy behavior, educators may need to provide cancer risk education that is based on youth’s conceptualizations of risk and the need to address short term benefits (e.g. socialization).

Strengths and limitations

Our qualitative study’s strengths are noteworthy. Our use of multiple methods and a diverse sample provided a richer, more robust, and comprehensive account of Kenyan youth’s perspectives of cancer and cancer risk. Despite these strengths, 14-year-olds were unavailable to participate in the study, and their views were missed. Youth perspectives of equating cancer to death could have affected the level of engagement and the information shared about the phenomena. In the data analysis, we did not calculate inter-rater reliability and that could have affected the findings we arrived at.

Conclusion

In the wake of increasing cancer incidence and mortality in Kenya and continued involvement by some youth in risk-taking behaviour, the study findings are important. Youth provided rich data on their socio-cultural perspectives that can be useful in developing effective cancer awareness, health promotion, and education programs. The foundation of developing these effective programs could start from what youth know, how they process risk, and put greater emphasis on areas of limited awareness.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Dr. David S. Busolo was supported by the Child Health Graduate Studentship in Nursing award Murphy Scholarship in Graduate Research in Oncology Nursing Sheu, L. Lee Family Scholarship in Oncology Research International Graduate Student Entrance Scholarship Research Manitoba Graduate Studentship award Manitoba Center for Nursing and Health Research College of Nursing Endowment Fund Graduate Student Research Grant Dr. Margaret R. Francis award . Dr. Roberta L Woodgate is supported by a Tier 1 Canadian Research Chair (CRC) in Child and Family Engagement in Health Research and Healthcare (CIHR -Canadian Research Chair - 950-231845).

Appendix

Demographic Form

1. What is your age in years? __________

2. Please indicate if you are male/female/Other____________

3. Where is your school located? ________ (Urban or Rural)

4. Which class are you attending? ___________

5. Which province have you lived most of your life? ___________

6. Do you take part in any activities outside of school? _______ (Yes or No)

1. If you do. What activities do you take part in? _____________

• (7) Do you work? _____ (Yes or No)

1. If you work, what type of work do you do? ________________________

• (8) Where do you live? _____________

• (9) How many people do you live with? _______________

• (10) How would you describe what you know about cancer?

1. I know a lot __________

2. I know just enough __________

3. I know a little __________

4. I don’t know anything __________

• (11)How common do you think cancer is in Kenya

1. Cancer is very common ___________

2. Cancer is not common ___________

3. I don’t know ____________

• (12) Do you know or have a close person with cancer? _______(Yes or No)

1. If yes, what is your relationship with that person? ________(Friend, parent, sibling, distant relative)