Participants’ demographic profile
A total of 100 participants (80 women and 20 men) contributed data through focus group discussions and in-depth interviews. Table 1 shows the sociodemographic characteristics of the study participants. Mean age reported was 36.8 yea rs. More than 4 in 10 women married; more than half reported a secondary education. About 41% of women were unemployed and about half (50%) in small scale self-employment. More than 8 in 10 women reported earning no income or less than 50,000 CFA (USD $83) per month. The mean age at which women had their first sexual encounter was 17.2 years with most women (46%) reporting a lifetime number of 2-4 sexual partners. One in three women reported current use of an oral contraceptive.
Table 1: Demographic characteristics of women in the study.
Demographic Characteristics
|
%
|
Mean Age
|
42.6
|
Marital Status
|
Single
|
34.9%
|
Married
|
44.6%
|
Other
|
20.5%
|
Education
|
None
|
3.2%
|
Primary
|
11%
|
Secondary
|
52.8%
|
Tertiary
|
33%
|
Employment
|
None
|
40.6%
|
Self Employed
|
49.8%
|
Government
|
9.6%
|
Income
|
None
|
42.8%
|
< 50,000 CFA
|
38.4%
|
> 50,000CFA
|
18.8%
|
Mean age at sex debut
|
17.2%
|
Lifetime sex partners
|
1
|
8.7%
|
2-4
|
46%
|
5-6
|
21%
|
7-9
|
8.9%
|
10 or more
|
11.7%
|
Don't Know
|
3.7%
|
Current oral contraceptive use
|
33.9%
|
Major themes and sub-themes
We adopted the socio-ecological model to identify and describe factors that facilitate or hinder access to cancer prevention and control for women in the study community. At the micro (individual) level the major themes that emerged included awareness, knowledge, risk perceptions and behaviors that impact access to and utilization of cervical-cancer screening programs. At the meso-level, themes that emerged included familial, social network, community and cultural norms that influence perceptions and utilization of cervical-cancer prevention, and the macro-level themes were related to overall macro-structural factors including the health system and policies that facilitate or inhibit access to cervical-cancer screening and prevention.
Micro level (Individual) factors
Awareness and knowledge
Awareness and knowledge of cancers in general and cervical-cancer in particular is important in cancer prevention and control. We found that nearly all participants were aware of at least one type of cancer, with cervical and breast cancers being the two most mentioned among female participants. Although most participants mentioned at least one type of cancer, only a few, mostly younger women, were able to demonstrate knowledge of risk factors associated with each type of cancer. Younger women, for instance, reported that sexual intercourse with multiple partners is a lifestyle risk factor in addition to exposure to genetic and/or environmental factors. Older women who subscribe to myths or misconceptions about cervical-cancer demonstrated generally poor knowledge of risk factors. Their opinion is reflected in the words of one participant who said:
“.... hmmm vaginal candidiasis, which comes from using unhygienic and unsanitary public restrooms is the reason for many women diagnosed with cervical-cancer. In addition, there are lots of women who wear “second hand” clothing, including underwear filled with germs that can cause this problem”. (FGD, Female HIV-negative 36-45 years)
Knowledge of the relationship between HPV and cervical-cancer was generally poor. Younger and older participants demonstrated no knowledge that persistent infection with HPV, especially types 16 and 18 is strongly linked to cervical-cancer. None of the older women reported having ever heard about HPV, and only a few of the younger women recalled having heard about HPV.
Risk perceptions and health-seeking behaviors
Risk perception and susceptibility to long term health outcomes are critical in taking preventive actions to avoid disease acquisition. Most participants acknowledged that a lot of people were at risk of a cancer diagnosis, especially given the increased number of cases recently being reported. With increased cancer incidence, there was a consensus that anyone is susceptible to being diagnosed with cancer if exposed to the risk factors. Perceptions of the severity of the risk, however, varied between different categories of participants. For example, older, less educated HIV-negative women were least likely to perceive any risk, whereas older WLHIV were more likely to report higher risk perceptions. Similarly, younger women regardless of HIV status reported a vulnerability to some risk factors, for example being in a sexual relationship in which they or their partners have sex with multiple partners.
Individual perceptions of risk influence preventive behaviors. Although none of the participants had ever been screened for cervical-cancer, those with higher educational levels or better knowledge of risk factors reported having previously acted or “did something” to minimize their exposure to risk. Younger women who discussed environmental, genetic and lifestyle risk factors reported taking preventive actions consistent with their beliefs about their vulnerability. Among older women, there were instances when the reported preventive action was based on their myths or misconceptions about cancers. One respondent reported that:
“Like cervical-cancer, I’ve heard that allowing antiseptic soap to penetrate the vagina during a bath can cause cervical-cancer, therefore, I make sure I do not use antiseptic soap to wash my vagina when taking a bath”. (FGD, Female HIV-negative =>46 years)
Despite the consensus that most women were susceptible to cervical-cancer, some participants did not consider themselves to be at risk. Those in this category agreed with statements expressed by a participant who said: “I take care of myself and I am sure I don’t have anything that will bring me cancer”. We also found that knowing someone who was diagnosed with cancer strongly influences the perception of risk and willingness to initiate preventive behaviors.
Participants who reported family members or friends diagnosed with or having died from cervical-cancer were more likely to report higher risk perceptions and to acknowledge the importance of preventive behaviors such as screening and obtaining information for cancer prevention. This was particularly common among a group of older WLHIV who reported knowing someone living with or died from cancer. They were also more likely to encourage others to take preventive active measures or to be better informed about the importance of cervical-cancer prevention.
Lack of access to information about cervical-cancer screening services
Access to information about cancers largely influences an individual’s knowledge, risk perception, and health seeking behavior. Our data did not show that women in the study communities have access to any source where they can obtain information about cervical-cancer. This meant that the few who sought information about cervical-cancer resorted to browsing the internet to obtain the information. Similarly, the private health facilities operating within the community that offered screening or other services related to cervical-cancer. The gap in access to information or services was highlighted by participants as a challenge for those who desired to prevent cervical-cancer. Most participants agreed that the absence of reliable, consistent and fact-based information created opportunities for mischievous individuals to spread false, negative and potentially dangerous information about cervical-cancer. Further, they agreed that “access to reliable and factual sources of information or services about cervical-cancer is critical to preventing the high number of deaths that occur due to late diagnosis and presentation”. One participant in the focus group of younger HIV-negative women indicated that:
“...the limited or complete lack of access to reliable and trusted sources of health information represented a major hurdle for those who know the dangers of cervical-cancer, but do not know how to access reliable and trusted information to enable them to take appropriate preventive actions. In an environment rife with myths, misconceptions and mixed messages from the internet, obtaining relevant information about the importance of cervical-cancer prevention is critical for women’s preventive behaviors.” (FGD, HIV-negative 25-35 years)
Cost as a deterrent to cervical-cancer screening
In the absence of publicly funded cervical-cancer screening programs, women who want to be screened for cervical-cancer have few privately run health facilities, which are often prohibitively expensive and outside the reach of most women. In discussing the cost of services as a challenge to cervical-cancer prevention, there was universal consensus that:
“cost is perhaps the biggest challenge to obtaining cervical-cancer screening, not only in the communities but for low-income women everywhere”. Without money, it is impossible to obtain health services even in government run hospitals” (FGD, WLHIV 36-45 years)
In women and men’s discussion groups, participants agreed that the economic situation in the country, with high unemployment rates, meant that families struggling with meeting basic needs for daily survival were likely to consider paying for cervical-cancer prevention very low on their list of priorities even in situations where they consider it to be fatal. Indeed, many women participants reported that they were screening for cervical-cancer for the first time only because the service was free (as part of the study). Despite not having to pay for screening, the participants still indicated that the cost of transport from their homes to the screening center was a major expense that only a few can accommodate within very tight budgets. Most of the women who showed up for screening did so only because they knew they would be reimbursed for their transportation costs. The words of a woman respondent captured participants’ feelings about how cost constitutes a barrier to accessing screening:
“It would have been impossible for me [many of us] to show up for the free screening if not that we knew we would be given transport money for coming. I know that if the service was not free, many women will not be able to come, therefore we are grateful to this hospital for this free service and even paying the cost of transportation to come.” (FGD, Female HIV-negative 36-45 years)
Another respondent emphasized this point when she said:
“When they asked me if I want to join the study, I told them I was not interested because I was not sure how much it will cost and I do not have the money to pay for something like this. It was when they told me that I do not have to pay that I agreed to join. How and where would I get the money if I have to pay?” (FGD, Female HIV-negative 25-35 years)
Similar opinions were expressed by male participants who suggested that families that struggle with meeting their basic needs for survival will not be able to pay the cost of screening from their meager budget for other essentials.
Meso-level (community norms and social networks) factors
Social networks and social norms
Social networks and prevailing social norms are critical in shaping individual attitudes and behaviors toward cervical-cancer prevention. Our data shows that characteristics of social network members such as age, educational attainment, socioeconomic status, and health-seeking behaviors influence individuals’ knowledge, attitudes and behaviors. Similarly, the type of information that is circulated within one’s social network also determines the extent of knowledge as well as myths or misconceptions that individuals hold about cervical-cancer.
Women who reported that they knew about cervical-cancer risk factors conceded their knowledge is shaped by what they heard, perhaps from the media, but more importantly by the information that is validated or refuted by their social network. For instance, participants who reported better knowledge of risk factors conceded their knowledge was shaped by and behaviors conform to expectations set by their social networks. Conversely, women who demonstrated poor knowledge or perception of risk were more likely to have friends and acquaintances who hold similar myths or misconceptions about cervical-cancer. Thus, social networks and social norms were critical in disseminating and/or validating information about cervical-cancer and options for prevention.
Cultural norms and the role of men
Both male and female participants extensively discussed the powerful influence of cultural norms in shaping men’s attitudes and behaviors towards cervical-cancer prevention. Female participants described cultural notions and nuances that often inhibit men from participating in initiatives to promote their own health, much less the health of their spouses. They suggested that men generally do not take much interest in women’s health issues nor encourage preventive behaviors. While there was a consensus that men needed to be proactive in cervical-cancer prevention, there were differences between younger and older women in their expectations regarding how much men should be doing in helping their spouses prevent cervical-cancer. Unlike older women, younger women were more forthcoming in expressing their opinion regarding how men should be more interested in taking concrete actions to help their spouses prevent cervical-cancer. As one respondent suggested:
“it should start by not having multiple sexual partners, which increases the risk of passing on a sexually transmitted infection”. (FGD, Female HIV-negative 25-35 years)
Older women shared the view that most men were constrained in terms of what they can do and that men’s lack of interest in the health of their spouses is the result of cultural expectations and/or notions of how men should conduct themselves. As one participant reported:
“a man who takes too much interest in women’s health runs the risk of being labeled by society and many men want to avoid such perceptions”. (FGD, WLHIV 36-45 years)
Men’s attitudes toward cancer prevention are shaped both by these cultural norms as well as their level of education and knowledge of risk factors for cancer. Generally, male participants with negative attitudes about cancer were those most likely to believe in myths and misconceptions about cancer. Similar to the women who hold myths about cancer, some men suggested that cervical-cancer, for instance, is most likely to be diagnosed in women who take their hygiene for granted by using second-hand clothes or their toilet habits or those who believed that such women were promiscuous. This category of men believed that very little can be done to prevent cervical-cancer. A male participant suggested that the way to prevent a diagnosis of cervical-cancer is for “women to avoid using clothing, unsanitary conditions and not sleep around”. Men with higher levels of education demonstrated better knowledge of the risk factors and positive attitudes for cervical-cancer prevention, including actively encouraging spouses to be aware of the risk and getting screened for cervical-cancer. One male participant reported that”
“preventing cervical-cancer is a responsibility both men and women should share equally; it should begin with preventing sexually transmitted infections, avoiding risk factors and obtaining screening when possible”. (FGD, Male Partners of HIV-negative Women)
HIV and health-related social stigma
Health-related stigma is a barrier to cervical-cancer prevention. Ignorance and the fear of death associated with cancers contribute to the pervasive stigma surrounding cervical-cancer. The belief that cervical-cancer is untreatable was widespread given the number of people reported to have died from one type of cancer or another. This perception continues to fuel stigma and, in some cases, the reluctance to screen voluntarily. Often, health conditions with high mortality rates were generally stigmatized. The perception that cervical-cancer is a disease associated with women’s reproductive organs also contributed to stigma given the cultural norms around female sexuality. As some female participants suggested, the association of cervical-cancer with either a woman’s reproductive organs or their sexual behavior is generally stigmatized. Some male respondents suggested that “a woman diagnosed with cervical-cancer may have herself to blame”. One female participant reported that:
“...women’s bodies are subject to all manner of sociocultural regulations and norms that men’s bodies are excluded from. Thus, any condition that affects women, especially their reproductive organ will be stigmatized even if they are not to blame.” (FGD, Female HIV-negative, 25-35 years)
Macro-structural (health system, health policy) factors
Weak health system and lack of infrastructure
Participants described numerous macro-structural challenges to cervical-cancer prevention and control in the study community. Among others, a weak health system, poorly equipped facilities, and poorly trained staff, all of which are necessary for cervical-cancer prevention and control were mentioned by participants as some of the most important structural barriers. Many participants suggested that the lack of cervical-cancer screening facilities in the regional hospital means that most women cannot access services within their community unless they go to large urban centers if they want to be screened. The lack of basic equipment for screening, shortage of trained health workers who can barely keep up with demand, old and dilapidated buildings and lack of comprehensive policies that can aid awareness about and encourage positive attitudes towards cervical-cancer screening were identified among the most challenging barriers.
Additionally, the high prevalence of HIV/AIDS in Cameroon and the focus on increasing access to prevention, care and treatment for people living with HIV/AIDS meant limited resources were available for other health issues including cancer prevention. Only recently has attention began to shift to the importance of addressing HIV associated comorbidities in women at risk. Some participants described the existence of a few private clinics where it is possible to obtain screening for cervical-cancer. However, they described additional challenges with accessing services from these private clinics, which are often exorbitant and besides the lack of trust in providers’ skills. As one participant reported:
“Private clinics are expensive and want to make as much money instead of providing appropriate care. I know of people who started going to a private clinic to receive care but came back to the Mile 1 [the Regional Hospital] because of poor treatment” (FGD Female HIV-negative, 36-45 years)
Lack of cancer prevention policies
The group of younger more educated women discussed challenges at the policy level. First, they highlighted the extensive focus on HIV/AIDS, which has resulted in a lack of attention on other important health issues, such as cervical-cancer and suggested that more needs to be done regarding cervical-cancer prevention. They also cited the ongoing political situation and marginalization, which meant that government officials only pay lip service to improve population health. Further, they discussed the rural-urban disparity in which health facilities in larger urban areas were better equipped and staffed compared to semi-urban or rural ones.
Cervical-cancer screening in the context of HIV/AIDS care and treatment program
The integration of cervical-cancer screening within general HIV care and treatment programs has been recommended as an effective way to increase access to screening for women at risk. We assessed participants’ perceptions and attitudes to the effectiveness of this approach. The WLHIV already in care agreed that such an approach was beneficial as they are able to continue their treatment for HIV and at the same time be screened for cervical-cancer. This helps them reduce their risk and the number of hospital visits given the cost implications if the services were separated. Women of unknown HIV status or those who previously tested negative for HIV, however, objected to the idea of a combined approach. The stigma of HIV and the fear of being seen going into an HIV treatment center and/or is suspected of living with HIV was cited as an impediment to why they would not utilize cervical-cancer screening offered within HIV care and treatment programs.
Similar opinions were expressed by male participants who suggested that it would be difficult for women, especially if they are reluctant to test for HIV and those who do not want to be seen going into an HIV clinic because of stigma. They indicated that it was not a good idea to combine cervical-cancer screening with HIV testing only because women who go in for cervical-cancer screening may be suspected of having HIV even if they do not. Both female and male participants, however, expressed positive attitudes and support for community-based cervical-cancer screening programs in which women had the opportunity to access screening within their homes or in community settings.