Perspectives of Screening-Eligible Women and Male Partners on Benefits of and Barriers to Treatment for Precancerous Lesions and Cervical Cancer in Kenya.

BACKGROUND: Cervical cancer is the leading cause of female cancer mortality in Kenya. Kenya's National Cervical Cancer Prevention Program Strategic Plan outlines efforts to reduce the burden; however, treatment services remain limited. This study identified male and female perspectives regarding benefits, facilitators, and barriers to treatment for precancerous lesions and cervical cancer.
MATERIALS AND METHODS: Ten focus groups were conducted in Nairobi and Nyanza in 2014 with females aged 25-49 years (n = 60) and male partners (n = 40). Participants were divided into groups dependent on screening status, sex, language, and geographic location. Qualitative analytic software was used to analyze transcribed and translated data.
RESULTS: Treatment was endorsed as beneficial for the prevention of death and the improvement of wellness, quality of life, symptoms, and family life. Barriers reported by males and females included the following: (a) concerns about side effects; (b) treatment-related fear and stigma; (c) marital discord; (d) financial and access issues; (e) religious and cultural beliefs; and (f) limited knowledge. Male endorsement of wanting to improve knowledge and communication with their partners, in spite of stigmatizing beliefs and misperceptions regarding females with abnormal screening results or those who have been diagnosed with cancer, was novel.
CONCLUSION: Incorporating qualitative data on benefits of and barriers to treatment for precancerous lesions and cervical cancer into Kenya's national priorities and activities is important. These findings can be used to inform the development and successful implementation of targeted, region-specific community outreach and health messaging campaigns focused on alleviating the country's cervical cancer burden. IMPLICATIONS FOR PRACTICE: This article provides important insight into female and male partner perspectives regarding benefits, facilitators, and barriers to treatment for precancerous lesions and cervical cancer. These novel research findings can inform the development of targeted community health interventions, educational messages, and resources and aid stakeholders in strengthening strategic plans regarding treatment coverage and cervical cancer prevention. Because several treatment barriers identified in this study are similar to barriers associated with cervical cancer screening in low- and middle-resourced countries, effective messaging interventions could address barriers to receipt of both screening and treatment. © AlphaMed Press 2017.

Introduction

Cervical cancer is the fourth most common cancer and the fourth most common cause of cancer death among women worldwide, with over half a million new cases and a quarter million deaths occurring each year [1], [2]. Eastern Africa has higher cervical cancer incidence and mortality rates than any other Sub‐Saharan region [1]. According to Nairobi Cancer Registry data, cervical cancer is one of the most common cancers diagnosed in Kenya and accounts for 21% of cancers among women [3]. Causing almost 2,500 deaths annually, it is also the leading cause of cancer death among women in Kenya [1]. Lack of resources, infrastructure, and trained personnel, coupled with high costs of treatment services, continues to impede progress in addressing Kenya's cervical cancer burden.

Estimates from the Kenya Ministry of Health suggest that although approximately 300 sites provide screening services in Kenya, only 10% provide outpatient treatment services consistent with see‐and‐treat approaches for precancerous lesions and treatment of diagnosed cervical cancer outlined in the National Cervical Cancer Prevention Program (NCCPP) Strategic Plan (2012–2015) [4]. Individuals who are able to access screening may not also have access to treatment services, especially in underserved regions. Treatments such as Loop Electrosurgical Excision Procedure (LEEP) and cryotherapy, and staff trained in conducting them, are not widely available.

In the public sector, diagnostic and treatment options are limited to the Kenyatta National Hospital in Nairobi and to some district hospitals. There are also a limited number of pathologists in Kenya, and availability of radiotherapy in public health facilities is inadequate [4]. Although radiotherapy is available at several private hospitals, private care is expensive and unattainable for many patients [4]. Due to financial restraints, few women who are prescribed concurrent chemo/radiotherapy are able to receive recommended treatment [5]. Some women may utilize traditional medicine and low‐cost herbal remedies in lieu of or in addition to medical services [5], [6], [7].

Kenya's NCCPP Strategic Plan aimed to address barriers related to cervical cancer and provided strategies to increase high quality, timely treatment services closer to screening locations; improve infrastructure and maintenance services for essential equipment; and provide health personnel with refresher training and on‐the‐job certification opportunities [4]. Although plans to address institutional obstacles have been developed, research is lacking in identifying barriers and facilitators to cervical cancer treatment in Kenyan communities and informing implementation of national strategies [4]. Exploration of male perspectives is particularly important because the plan also advises that in order to increase awareness and utilization of services, the development of behavior change communication strategies should involve both women and their male partners.

Research suggests that high loss to follow‐up and poor treatment coverage may still occur even when aggressive strategies are used and basic infrastructure is available [8]. In preparation for the increased provision of treatment services as proposed by the NCCPP Strategic Plan, benefits, facilitators, and barriers to treatment for precancerous lesions and cervical cancer were assessed in Nairobi and Nyanza via focus groups with females and male partners.

Materials and Methods

Study methodology including participant recruitment, eligibility procedures, and discussion protocol questions were previously described [9]. Briefly, community mobilizers were invited by local leaders to recruit study participants from health care and community forums. Participants were given the option to immediately participate in a study screening session or participate in a session at a later date. Study selection criteria included “being a woman aged 25–49 years or a man aged ≥18 years and married to a woman aged 25–49 years, a resident of Nairobi or Nyanza, and willingness to participate in an audio‐recorded focus group for up to 2 hours” [9].

Ten focus groups (6 female groups [n = 60]; 4 male groups [n = 40]) were held in Nairobi (urban) and Nyanza (rural). Focus group discussion guides were pilot tested prior to the implementation of the primary focus groups (n = 4 males; 4 females). Focus groups were held in facilities considered to be convenient to participants, were audio‐recorded, and lasted approximately 2 hours. Travel reimbursements and a standard, culturally appropriate token of appreciation were provided.

A total of 100 participants (60 females; 40 males) were included in the study. Participant place of residence was evenly divided between Nairobi and Nyanza. All participants spoke Kiswahili, and half were Dholuo speakers. The majority of female participants (66%) and fifty percent of male participants’ female partners (50%) never received a cervical cancer screening test. The mean age was 32.5 years for female participants and 37.1 years for male participants.

Participants were divided into focus groups dependent on screening test status (previous receipt of a screening test by the female participant or the wife of a male participant), sex, language, and geographic location [8]. There were 10 participants per focus group. Division criteria resulted in eight group classifications: (a) unscreened women in Nairobi (n = 20; US‐Nai women) or (b) Nyanza (n = 20; US‐Ny women); (c) screened women in Nairobi (n = 10; S‐Nai women) or (d) Nyanza (n = 10; S‐Ny women); (e) male partners of unscreened women in Nairobi (n = 10; US‐Nai men) or (f) Nyanza (n = 10; US‐Ny men); or (g) male partners of screened women in Nairobi (n = 10; S‐Nai men) or (h) Nyanza (n = 10; S‐Ny men). Informed consent was obtained from all participants. In Nairobi, discussions were conducted in either English or Kiswahili, whereas those in Nyanza were conducted in Dholuo.

Statistical Analysis

Analysis procedures were previously described [9]. Audio recordings from each focus group were transcribed and translated into English. To ensure accuracy, all responses were back translated and team members compared transcripts to focus group notes before placing final transcripts into Microsoft Word 2013 (Microsoft, Redmond, WA, https://www.microsoft.com/en-us). QSR International's NVivo 10 software (QSR International, Melbourne, Australia, http://www.qsrinternational.com) was used for data analysis. During analysis, two themes were identified by both male and female respondents—“treatment benefits and facilitators” and “treatment barriers.” Supplemental online Appendix 1 provides the focus group moderator guide questions and treatment definitions that were used to assess these themes.

Results

Perceived Benefits and Facilitators to Receiving Treatment

Participants generally perceived that detecting and subsequently being able to treat cancer at earlier stages, spreading awareness about treatment availability, and receiving support and encouragement from male partners to receive treatment were facilitators. Reported benefits to treatment included prevention of death and the improvement of wellness, quality of life, symptoms, and family life.

Treatment at Early Stages and Associated Awareness.

S‐Nai women described treatment as beneficial and effective when cancer was detected at earlier stages. US‐Nai and S‐Ny men uniquely discussed the importance of spreading awareness about treatment availability, with several suggesting that women who have undergone treatment can help encourage others to seek treatment in earlier stages (Table 1; supporting quote 1 [q1]–q3).

Table 1.

Benefits and facilitators to cervical cancer treatment, supporting quotes by theme, Kenya Qualitative Assessment Study, 2012–2015

Abbreviations: F, female; M, male; Nai, Nairobi; Ny, Nyanza; q, quote; S, screened; US, unscreened.

Prevention of Death.

Prevention of death as a treatment benefit was mentioned by participants in all groups, with the exception of S‐Nai and S‐Ny women (Table 1; q4–q6).

Wellness and Quality of Life.

All groups perceived treatment as a beneficial method to increasing a woman's overall wellness and quality of life (Table 1; q7, q8). Women in all groups reported that treatment can provide hope for healing and recovery from cancer. S‐Nai women also expressed that treatment allows a woman to feel well so she can “continue with her duties.”

Improvement of Symptoms.

Women in Nairobi and men in Nyanza felt that symptom improvement was another important treatment benefit. US‐Nai women suggested that symptoms such as discharge, abnormal bleeding, odor, and pain would stop after treatment (Table 1; q9). Nyanza men also mentioned pain relief as a benefit (Table 1; q10).

Family Life.

One S‐Ny woman and one S‐Nai man both suggested that treatment provides women with the ability to have children. Men in Nairobi and Nyanza suggested that it was important to support women receiving treatment because it is beneficial to one's family unit (Table 1; q11–q13).

Perceived Barriers to Receiving Treatment

The majority of respondents from all groups reported treatment barriers. Common barriers reported included the following: (a) concerns about side effects; (b) treatment‐related fear and stigma; (c) marital discord; (d) financial and access issues; (e) religious and cultural beliefs; and (f) limited knowledge. Only a few US‐Ny men suggested that there were no barriers to treatment.

Side Effects.

Compared with those from Nyanza, respondents from Nairobi more routinely expressed concerns about treatment‐related side effects as a barrier. Concerns about treatment being painful were primarily voiced by S‐Nai women, although a few participants from Nyanza also suggested there is pain or burning after treatment (Table 2; q1, q2). Among US‐Ny women, the possibility of being unable to give birth if the cervix was removed was uniquely identified as a problematic treatment‐related side effect. Although not a primary theme, the possibility of ongoing bleeding after receiving treatment was a deterring factor reported in a group of S‐Nai men.

Table 2.

Barriers to cervical cancer treatment, supporting quotes by theme, Kenya Qualitative Assessment Study, 2012–2015

Abbreviations: CDC, Centers for Disease Control and Prevention; CHW, community health workers; F, female; M, male; Nai, Nairobi; Ny, Nyanza; q, quote; S, screened; SHOFCO, Shining Hope for Communities; US, unscreened.

Nairobi women were concerned about possible long‐term effects such as those from receiving chemotherapy, including hair loss, scaly skin, extreme fatigue, inability to eat, and unknown effects within the body. US‐Nai women were uniquely concerned about psychological effects and reported that women become “sickly” once they start chemotherapy and are deterred from undergoing treatment because it “seems like a gruesome affair” (Table 2; q3).

Fear and Stigma.

Across most groups, participants endorsed fear of the overall treatment process as a barrier. For many, feelings of fear were related to cultural stigma, such as the belief that having cancer suggests a woman may also have a sexually transmitted infection or has been unfaithful. Nairobi women reported fear that stigma could occur when women who are receiving treatment are seen in the hospital or out in the community and they have noticeable side effects of treatment (e.g., hair loss). According to them, implications of this might include having others talk negatively about treated women and their spouses, being toldthat they will not be able to acquire a husband because they are sick, or losing friends who would be embarrassed to be seen around someone undergoing treatment.

US‐Nai women seemed more concerned about stigmatization than screened women and were more likely to discuss negative stigma‐related psychosocial impacts. They expressed that fear and stigma can lead to diminished self‐confidence, negative attitudes, depression, hiding results, and a general fear of “facing society” (Table 2; q4). Women might also believe that they will become a burden to the community and their family members because they need expensive treatment.

US‐Nai women and men endorsed difficulties with talking about treatment without being gossiped about or experiencing discrimination (Table 2; q5). Additionally, men suggested that because “the community relates cancer to human immunodeficiency virus (HIV) infection,” people might assume that those with cancer will also have HIV. Nyanza participants echoed concerns expressed by those in Nairobi regarding keeping treatment a secret (Table 2; q6, q7).

Marital Discord.

All groups expressed concerns about treatment causing problems within families and between partners, primarily related to fear of marital discord, separation, and lack of spousal support or approval. Consequently, some women may not consult with their husbands when considering treatment. According to male and female respondents, after a woman has received a positive screening result, their partner is not always accepting or supportive of the woman receiving treatment (Table 2; q8). Even though some men suggested they would support their partner and help them seek treatment, other participants raised many concerns (Table 2; q9, q10).

According to one S‐Nai woman, a woman might be unable to get treatment because the “husband will refuse.” Nairobi men were specifically concerned with the need for wives to talk to husbands about their diagnosis and their desires to receive treatment (Table 2; q11). They suggested, however, that women should be cautious, because some husbands would not be understanding, may become “violent,” and/or require that a doctor explain the situation to them directly (Table 2; q12). According to them, if treatment involved surgery, they would need to be present in order to provide signed approval or consent.

Nairobi men also reported that women who do not discuss treatment options with their husbands or secretly receive services could be perceived as cheating (Table 2; q13). Similarly, Nyanza men suggested that women who receive treatment without their husband's knowledge may be viewed as behaving “contrary to your word,” which can result in blame, heated arguments, or separation.

Abstinence.

Nairobi and Nyanza women expressed concerns about the ability to remain abstinent and reported that marital discord occurs when women are instructed to abstain from sexual intercourse after treatment (Table 2; q14). One US‐Nai woman believed that if she were undergoing treatment and had an understanding spouse, they would “know the need to not have sex,” although another suggested that treatment is “destructive to family life.” According to one S‐Nai woman, challenges may arise because “the husband might look for other ladies to satisfy.”

Nyanza women expressed that husbands might become hostile, blame the women for getting treatment that results in a need for temporary abstinence, accuse them of having a sexually transmitted disease, or “chase them away” if he thought she might be unable to have children as a result of treatment. Some women reported that they would be able to abstain until “health is restored,” but others suggested they would only be able to abstain if a medical provider directed them to in the presence of their husband (Table 2; q15).

Nairobi men had differing opinions about women needing to abstain from sex. Some suggested that they would have to abstain because “whatever affects them affects the whole family,” so they would “just persevere” while their wife healed. Others, however, suggested that men wouldn't care if their wife had been treated and would still “insist on sex” or end up having affairs (Table 2; q16). Nairobi and Nyanza men suggested that they would be more likely to practice abstinence if their wives consulted with them, they were present at their wives’ appointments, and they were able to speak with a doctor and receive documentation about the treatment and recovery process (Table 2; q17–q19).

Financial Concerns.

All groups discussed financial barriers, primarily regarding lack of money and expensive treatment costs (Table 2; q20). One S‐Nai woman suggested that the family might be affected if they have no money to take the woman to treatment, and another alluded to socioeconomic disparities (Table 2; q21). Men from all groups mentioned the importance of doctors involving partners because they will bear transport and treatment costs.

Nairobi men suggested that a husband is more willing to support his wife financially if he is knowledgeable about cancer and aware that his wife is suffering, especially when he benefits from his wife becoming healthy and able to continue bearing children and fulfilling domestic duties. According to S‐Ny men, there is a cost advantage when cancer is discovered early because the treatment would be less expensive. Nyanza men also expressed that even if men want to pay for treatment, they may not be financially able to do so (Table 2; q22).

Access, Personnel, and Resource Issues.

Although a few S‐Nai and S‐Ny women mentioned that they could easily access treatment, the majority of respondents raised multiple access barriers (Table 2; q23). Distance to a treatment facility was a barrier mentioned by all Nairobi groups, S‐Ny women, and US‐Ny men (Table 2; q24). Not knowing where to get treatment, if it was available at all, and if treatment was available at the same locations where screening tests were offered were barriers reported by US‐Ny men. US‐Ny men also suggested that women would likely seek treatment services at nearby mobile clinics or dispensaries, but that having to go to a “screening dispensary” to get a referral to receive treatment at a different location was a barrier.

Nyanza and Nairobi women identified the lack of personnel able to provide treatment services as a substantial barrier to women seeking treatment (Table 2; q25). The importance of equipment availability in local hospitals was mentioned by a US‐Nai man. US‐Nai women expressed concerns about health personnel possessing a high level of expertise and the lack of trust in community health workers even though they may provide cheaper services (Table 2; q26).

In addition to physical access issues, barriers related to time required for treatment were also of concern for most groups. US‐Nai women commented that treatment can be an “inconvenience to lifestyle in terms of time” and also “in terms of the process that you have to go through.” S‐Ny women suggested that lack of time is a barrier and that the process can take up 2 months. When men were asked about how long it takes for a woman to heal after treatment, most commented that they didn't know, and one S‐Nai man suggested that it takes 3 months. One S‐Ny man suggested that it depends on a woman's immune system because a weakened immune system leads to a slow recovery, especially if she has other diseases like diabetes.

Religion and Culture.

Reliance on God and/or traditional beliefs in lieu of utilizing westernized medicine and treatments was endorsed as a barrier by all groups except US‐Nai women and US‐Ny men. Nyanza participants identified religion as a barrier because some churches don't want and/or don't allow treatment (Table 2; q27, q28). Similarly, Nairobi participants suggested that some churches don't believe in treatment and some women believe “traditional healers can solve her problems” and might rely on “witch doctors” or cultural treatment methods that would be contrary to treatment regimens prescribed by medical doctors (Table 2; q29).

Knowledge About Treatment.

Beliefs that no treatments for cancer are available, that cancer caught in late stages can't be treated, or that treatments aren't effective can prevent women from seeking health services (Table 2; q30). US‐Nai women indicated that this may be especially true where “people in [the] community don't know anything about cancer” and “everybody believes cancer can't be treated.” Due to lack of knowledge about treatment, women diagnosed with cervical cancer may have fatalistic views (Table 2; q31). S‐Nai, US‐Nai, and US‐Ny women endorsed fatalism, expressing that women might think that their life is “meaningless” and “has come to an end,” or that treatment is not worth the expense (Table 2; q32). S‐Ny women implied that many women do not seek treatment, with one commenting that “very few come back after screening, but [the] majority disappear.”

Nairobi men alluded to treatment being dependent on cancer stage and that, in some cases, the “affected area can be totally removed” (Table 2; q33). One S‐Ny man said he had heard that “cancer can be burnt away,” and others suggested they had heard of treatment, but weren't sure how it was done or that the only treatable cancers are the “ones that affect women.” One respondent, however, commented that “most cancers when discovered early are treatable.” Similarly, among US‐Ny men, some believed cancer was not treatable, others suggested that to treat cancer, “you must remove the organ that is cancerous,” and one commented that drugs are available for treatment (Table 2; q34).

Discussion

Respondents viewed treatment as beneficial and believed it could improve symptoms, prolong life, and allow a woman to be well for her family. Reported concerns about treatment side effects were consistent with studies showing treatment perceptions involving unbearable pain [10] and eliminating a woman's ability to have children [11], [12].

Findings that women rarely discussed their cancer diagnosis or elected to get treatment due to fear of stigma strengthen research identifying cervical cancer‐related psychosocial challenges [12]. Because stigma may be more prevalent in communities lacking appropriate educational information, it is not surprising that participant reports of limited discussion about cervical cancer and related treatment coincide with limited information and misinformation among community members. Because misinformation about cervical cancer and its relationship to and difference from other diseases (e.g., HIV/AIDS) was routinely reported, opportunities to reduce stigma may include the provision of accurate educational messaging resources.

Previous studies have reported concerns of marital discord occurring after a woman informs her husband that she has cervical cancer [9], [11]. We uniquely found that male and female participants’ concerns about the need to abstain from sexual intercourse while a woman is undergoing treatment, doctors not discussing the treatment process with husbands, and women's fear of marital discord can negatively impact their decision to seek treatment.

Concerns about economic strain and resources to pay for treatment, medications, and transportation align with previous studies associating cost with a patient's decision to seek or continue treatment [5], [8], [10], [12], [13], [14]. One such study found that even when free services were offered to patients, significant barriers still existed due to expenses required to reach referral hospitals [8]. Patients who are unable to afford treatment may end up waiting for long periods; receiving basic care instead of full, recommended treatment; starting treatment at a later stage; choosing to forgo treatment; or dying before beginning treatment [12], [13]. Concerns about seeking treatment and burdening family members also support previous research [10], [12].

Findings regarding reported transportation difficulties, long waits, issues with referrals, healthcare workers’ lack of expertise, and shortages of personnel and equipment were consistent with previous studies [5], [7], [8], [12], [13], [14]. One such study supports our findings by reporting that providers are challenged with high patient workload, mismanagement of referrals, and inadequate treatment and inpatient facilities and staff specialized in cancer care, which exacerbate delays in timely treatment and poor patient prognosis [13]. Strategies to address these barriers may include the addition of treatment services within or nearby screening facilities, trained personnel, rural facilities, and transportation assistance or incentive programs. Alongside infrastructure investment, constructing an effective referral pathway among health care practitioners may alleviate access barriers [5], [14]. With this foundation, women with premalignant cervical lesions could ideally have cost‐effective and timely access to preventive and early treatment through immediate cryotherapy or LEEP based on visual inspection with acetic acid (VIA) or visual inspection with Lugol's iodine (VILI) results [5], [14].

Most groups identified reliance on God and/or traditional beliefs and religious‐based medical objections as barriers; however, research exploring these barriers to seeking cervical cancer treatment in Kenya is limited. Studies have reported that cancer patients often rely on religious beliefs for comfort and emotional support [10], view a cancer diagnosis as impending death that is under God's control [10], and experience recurrent anxiety and fear of death, which also affects their caregivers [12]. Studies have also shown that people diagnosed with cancer may forgo medical treatment and rely on traditional medicines and herbs [6], [15], although outcomes do not appear to differ for those who used herbal treatments compared with those who did not [5]. An additional study revealed that some women credit their late cancer diagnosis to the utilization of herbalists or complementary alternative medicine practitioners who often discourage seeking formal health care, subsequently delaying correct diagnoses and initiation of early treatment [14]. Religious and cultural barriers may be alleviated through outreach about the importance of seeking early medical care for improved quality of life and chance of survival [14].

Findings regarding knowledge barriers and beliefs about treatment being unavailable, expensive, and ineffective were consistent with previous studies [10], [11], [13]. Educational campaigns focused on emergent focus group discussion themes and materials that differentiate between treatment types (e.g., options depending on cancer stage) may help address knowledge gaps. Tailored efforts can help ensure people are knowledgeable about regional availability of treatment services and treatment not always being available through the same doctor and/or location where they may have received screening.

This research uniquely examines Kenyan male partner perspectives of cervical cancer treatment. The segmentation of respondent perceptions by geographic region and screening status is also novel. Results may not be generalizable to geographic regions outside of Nairobi and Nyanza in Kenya, where participants were recruited. Participant treatment knowledge was possibly higher than in other locations given increased treatment availability in study locations. However, due to lack of educational resources, knowledge regarding post abnormal screening test interventions is limited; therefore, a broad definition of treatment was used. Due to the small scale of this study, we were not able to further segment by additional participant characteristics (e.g., HIV status) and maintain a sufficiently powered sample. Despite these limitations, treatment barriers identified in this study may represent regions of Kenya with similar cultural, religious, or behavioral norms.

Conclusion

Several treatment barriers identified in this study are similar to barriers associated with cervical cancer screening, such as knowledge gaps, religious or cultural beliefs, spousal approval, stigma, and access to services [9]. Although the NCCPP Strategic Plan promotes see‐and‐treat approaches for precancerous lesions and treatment of diagnosed cervical cancer, the majority of screening clinics lack treatment services [4]. Thus, effective messaging interventions should strategically address barriers to receipt of screening and treatment dependent on target locations and populations. Community outreach through the 12,338 estimated cervical cancer survivors in Kenya may help dissipate the common belief that cancer is not survivable [2]. Additionally, it is important for health personnel to discuss comparisons between treatment for cervical cancer versus treatment for chronic conditions (e.g., diabetes) and infectious diseases (e.g., HIV). Although dissemination of information about cancer and treatment options is crucial, careful consideration about psychosocial implications is needed when communicating about treatment options in regions where services may not be available. Adherence to the NCCPP Strategic Plan, coupled with targeted health messaging based on the findings from this study, could help prevent cervical cancer deaths [1].

See http://www.TheOncologist.com for supplemental material available online.