Global Health and Cancer

Identifying Barriers and Facilitators to Breast Cancer Early

Detection and Subsequent Treatment Engagement in Kenya:
A Qualitative Approach
ROBAI GAKUNGA ,a ASAPH KINYANJUI,b ZIPPORAH ALI,b EMILY OCHIENG’,c NANCY GIKAARA,b FLORENCE MALUNI,c DAVID WATA,d
MERCY KYENG’,e ANNE KORIR,f SUJHA SUBRAMANIANg
a
Independent Research Scientist, Nairobi, Kenya; bKenya Hospices and Palliative Care Association (KEHPCA), Nairobi, Kenya; cKenya
Cancer Association (KENCANSA), Nairobi, Kenya; dKenyatta National Hospital, Nairobi, Kenya; eAfrica Centres for Disease Control and
Prevention, Addis Ababa, Ethiopia; fKenya Medical Research Institute, Nairobi, Kenya; gRTI International, Durham, North Carolina, USA
Disclosures of potential conflicts of interest may be found at the end of this article.
Key Words. Breast cancer • Early detection of cancer • Cancer diagnosis and treatment • Focus groups •
Hermeneutic phenomenology

ABSTRACT
Background. Early detection and prompt access to quality investigators. Together they reviewed the codes and identi-
treatment and palliative care are critical for good breast fied themes.
cancer outcomes. Interventions require understanding of Results. The key barriers were costs, inadequate knowledge,
identified barriers and facilitators to care. A hermeneutic distance to health facilities, communication with health pro-
phenomenological approach, whose purpose is to describe viders, medicines stockouts, long waiting periods, limited or
feelings and lived experiences of participants, can expand no counseling at diagnosis, patient vulnerability, and limited
the existing scope of understanding of barriers and facilita- access to rehabilitation items. Facilitators were dependable
tors in accessing breast cancer care in Kenya. social support, periodical access to subsidized awareness, and
Methods. This is qualitative research applying focus groups early detection services and friendly caregivers. We found no
and a hermeneutic phenomenological approach to identify marked differences in perceptions between groups by socio-
barriers and facilitators to breast cancer care from the economic status.
knowledge, perceptions, and lived experiences of women Conclusion. There is need for targeted awareness and educa-
with and without a diagnosis of breast cancer in Kenya. We tion for health providers and the public, early detection ser-
conducted four focus group discussions with 6–11 women vices with onsite counseling and cost mitigation. Support from
aged 30–60 years in each. Groups were classified according the society and religious organizations and persons may be lev-
to breast cancer diagnosis and socioeconomic status. The eraged as adjuncts to conventional management. Further inter-
transcribed discussions were coded independently by two pretations are encouraged. The Oncologist 2019;24:1549–1556

Implications for Practice: Continuing cancer education for health providers in technical skills for early detection, treatment,
and survivorship care, as well as nontechnical skills like communication, and an understanding of their patients’ preferences
and socioeconomic status may guide individualized management plans and positively affect patient experiences. Patients
and the general public also need education on cancer to avoid misconceptions and inaccuracies that perpetuate fear, confu-
sion, delayed presentation for treatment, and stigma. Critical analysis of the cancer care value chain and processes, develop-
ment, and implementation of interventions to reduce costs while streamlining processes may improve client experiences.

INTRODUCTION
The estimated annual number of new cases of breast cancer and treatment services [2]. Although several studies in sub-
(BC) in Kenya is about 6,000 with approximately 2,550 deaths. Saharan Africa (SSA), including Kenya, have identified barriers
By 2025, a 35% increase is projected [1]. Good population out- and facilitators to early detection, diagnosis, and treatment, it
comes require readily accessible early detection, diagnostic, is not clear if the list is exhaustive. Barriers identified include

Correspondence: Robai Gakunga, B.V.M., M.B.A., P.O. Box 2185-00202 KNH Nairobi, Kenya. Telephone: 254-723-743524; e-mail:
[email protected] Received April 2, 2019; accepted for publication August 23, 2019; published Online First on October 10,
2019. http://dx.doi.org/10.1634/theoncologist.2019-0257

The Oncologist 2019;24:1549–1556 www.TheOncologist.com © AlphaMed Press 2019

1550 Breast Cancer Management in Kenya

Table 1. Focus group discussion topics on women breast cancer (women only)
Topics (focus groups) Description of topics
Breast cancer knowledge (all General knowledge about cancer
four groups) Knowledge about breast cancer: source of information
Knowledge about prevention of breast cancer
Knowledge about risk factors
Knowledge about breast cancer screening: source of information, if ever been
offered and where
Access to care (all four groups) Health care provider: trust, communication, choice
Access to care: distance, cost of travel, cost of services
Breast cancer diagnosis and Community perception about women with breast cancer
treatment (groups with a Before diagnosis: signs or symptoms noticed, if diagnosis followed screening
diagnosis of breast cancer) Experience while seeking care: any delays and reasons for delay-cost, distance,
family, work
Experience receiving diagnosis: tests done, how long it took, receiving the bad news,
who gave the news
Experience receiving treatment: treatment plan, cost of treatment, support from
insurance, if treated locally or abroad, follow-up care, side effects
Access to breast cancer If individuals have ever been screened or why not
screening (groups without a Cost of screening
diagnosis of breast cancer) Effect of cost on screening
Effect of distance to facility on screening
Factors that would facilitate screening
Final remarks (all four groups) Final remarks on issues discussed

low or lack of BC awareness, partner consensus, lack of infor- women diagnosed with BC (for groups designated BCa) through
mation, distant health facilities, long queues in hospitals, membership lists of our partner organizations, Kenya Cancer
costs, fear, stigma, and inadequate health professionals to per- Association and Kenya Hospices and Palliative Care Association,
form tests or to provide genetic counseling [3–16]. Facilitators and their affiliates. The group of women without a BC diagnosis
are educational messages and social support from religious were recruited through general outreach. Each group was fur-
persons and partners [10, 11]. We aimed to expand the scope ther separated into two cohorts based on socioeconomic status:
of current research and extend multidisciplinary involvement. high socioeconomic status (HSES) and low socioeconomic status
What are the barriers and facilitators to accessing women (LSES). The resulting four groups (BCa-HSES, BCa-LSES, HSES, and
breast cancer care (BCC) in Kenya? Is there a difference in LSES) were homogenous by BC diagnosis and socioeconomic sta-
knowledge and perception between women with and without tus. After eligibility assessment, women were approached by
a BC diagnosis? Is there a difference by socioeconomic sta- trained research assistants for consent to participate. Participants
tus? And what are the lived experiences of these women were drawn from Nairobi county, an urban setting and its envi-
rons. Table 2 details the characteristics of the four focus groups.
when seeking and during care? We used the hermeneutic
Those who had had a diagnosis of BC were within 3 years post-
phenomenological approach to elicit feelings and lived expe-
diagnosis to minimize recall bias. Each individual provided writ-
riences in participants’ own statements that may pave the
ten consent after being informed that the purpose of the
way for our readers to draw otherwise implicit information
discussion was for us to understand the issues related to the use
based on their own expertise. We leveraged focus groups’
of health care services and specifically their knowledge about
advantage of participant interaction to draw out more and
cancer and use of BC services and that the findings would help
richer information. Bradbury-Jones et al. suggest that “use of us identify optimal client-centered approaches for scaling up ser-
focus groups within a phenomenology framework may pro- vices. Four focus group discussions, with 6–11 women aged
vide a greater understanding of phenomenon under study” between 30 and 60 years in each, were conducted in Nairobi,
[17]. To our knowledge, this is the first hermeneutic phenom- Kenya, between February and June 2018.
enological study conducting standardized focus group discus- Trained and experienced interviewers facilitated the discus-
sions using similar discussion guides for women with and sions with at least three note takers per discussion. Participants
without a diagnosis of BC in SSA. were individually asked to share their knowledge, perceptions,
and lived experiences on the key concepts under study leading
to discussions within the groups. We sought to exhaust infor-
MATERIALS AND METHODS mation on concepts by providing adequate time for responses.
This was a qualitative study using focus groups and herme- Discussions were held in English and Kiswahili as appropriate, in
neutic (interpretive) phenomenology. Ethical approvals were quiet secluded rooms that were free from interruptions. Partici-
obtained from the Kenyatta National Hospital-University of pation was voluntary, each participant was offered $5.00 as
Nairobi Ethics and Research Committee and Research Trian- travel compensation, and refreshments were provided.
gle Institute.

Data Collection Data Analysis

We created a focus group discussion guide based on key con- Note takers’ transcripts were merged manually soon after
cepts of access to BC care in Kenya (Table 1). We recruited each discussion by investigator R.G. who then returned

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Gakunga, Kinyanjui, Ali et al. 1551

Table 2. Description of participants of four focus groups were common between women with and without a BC diag-
drawn from Nairobi, Kiambu, and Machakos Counties of nosis, whereas others were specific to groups. Those without
Kenya a BC diagnosis seemed to have more misconceptions and
Group Description inaccuracies than those who had had a BC diagnosis, and
there were no marked differences in knowledge and percep-
BCa-HSES Women with a diagnosis of breast cancer aged
between 30 and 60 years. They were in formal tions by socioeconomic status.
employment or had been before their cancer
diagnosis, were drawn from different support Key Barriers
groups, and had received treatment at private
facilities. They all conversed in English, Barrier 1: Inadequate Breast Cancer Knowledge
suggesting that they were of middle to higher
socioeconomic status. General Knowledge and Perceptions About Cancer.
Participants described cancer as “a growth,” “it is about cells
BCa-LSES Women with a diagnosis of breast cancer aged
between 30 and 60 years. The majority were not that grow abnormally” (BCa-LSES), a “bad disease that has no
working, and a few were casual workers. All had cure,” it “does not discriminate and any one can get it” (LSES).
received treatment from public facilities, many lived From a nonlayman perspective, some of their statements were
in informal settlements, and discussions were inaccurate: “an early diagnosis of cancer leads to healing”
conducted in Kiswahili, suggesting that they were of
lower socioeconomic status. (LSES) and that “breast cancer is a growth that can make the
HSES Women without a diagnosis of breast cancer aged hair to fall off” (LSES). The women expressed themselves with
between 30 and 60 years. They were professionals some undertones of fear that cancer is a death sentence:
in their own respective fields, and most had a “When I hear the word cancer, I see death, I see a growth that
source of income. Their literacy levels were high, leads to death” (BCa-LSES).
discussions were conducted in English, and all were
articulate in English, suggesting that they were of
middle to higher socioeconomic status. Knowledge on Risk Factors of Breast Cancer. Although all
LSES Women without a diagnosis of breast cancer aged participants had heard about BC, their knowledge of risk fac-
between 30 and 60 years and recruited from an tors was at times incorrect. We describe this in Table 3.
informal settlement. They had average to low
literacy levels, and the discussion was conducted in Genetics was highlighted by a woman (BCa-LSES) whose
Kiswahili, suggesting that they were of lower mother and grandmother had been diagnosed with BC, so
socioeconomic status. They were mainly health care she believed that genes had a role to play in her own diagno-
volunteers associated with a local community-based sis. Another woman said that “Probably chances are higher
organization.
compared to those [families] without” (HSES).
Abbreviations: BCa, breast cancer; HSES, high socioeconomic status;
LSES, low socioeconomic status.
Knowledge on Early Detection of Breast Cancer. Only a few
them to the note takers for verification. The four transcripts of the participants had ever been screened for BC. There
were read many times by investigators R.G. and S.S. to was good knowledge that “early screening would lead to
internalize the discussions. The data in the transcripts were early diagnosis and better management of the disease”
coded line by line by R.G. and S.S. independently. R.G. and (BCa-LSES) and “screening can prevent cancer” (BCa-LSES).
S.S. met, discussed the codes for consensus, and catego- In the HSES group, most women said they knew about
rized the codes. They developed a two-by-two matrix with breast self-examination (BSE) and clinical breast examina-
the columns representing BC diagnosis status and the rows tion (CBE). Some could perform BSE confidently, and some
representing socioeconomic status. This was to better visu- could not perform it. Those who had heard about CBE did
alize the coded data by the originating focus group and to not know how it was done or thought that they could do it
identify codes that were common across focus groups. We on themselves. Few had heard about mammograms, and
used the categories (themes) to structure our report. only one participant had had mammography.
R.G. and S.S. returned to the transcripts and color- Several women in the HSES group were somewhat con-
coded statements that were important and held meaning vinced that the lump was the only sign or symptom of BC:
to support answers to our research questions according to “lump—the only one known—there could be other signs but
the source focus group. These color-coded excerpts were lump is all that is known,” “breast self-exam … if no lump …
transferred appropriately into our report narrative, and the good to go,” and “we don’t know about any other informa-
colors helped identify the source focus group. tion.” We probed if they knew about discharge from the nip-
ple. One participant said that people would think that a
discharge from the nipple was an infection, and the others
RESULTS agreed. Another woman said that pain in the breast was an
Table 3 displays the emerging themes identified by investiga- unclear sign of cancer. Reddening of the breast was mentioned
tors, and the narrative includes verbatim data organized as in the LSES group: “If one notices certain symptoms like red-
barriers and facilitators, both focusing on diagnostic and dening of the breast, they need to be checked immediately.”
treatment delays and experiences. Although women with a
BC diagnosis were led to discuss diagnosis and treatment, Barrier 2: Health System Delays
whereas those without a cancer diagnosis were led to discuss A participant from the BCa-HSES group whose late mother
screening, these discussions often crossed over because the had BC grew up with a lot of fear and used to go for screen-
concepts seemed interrelated. Some barriers and facilitators ing whenever there was a free offer. Lumps were found in

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1552 Breast Cancer Management in Kenya

Table 3. Emerging themes identified as possible barriers and facilitators to breast cancer early detection and subsequent
treatment among women in Kenya
Themes Women with a diagnosis of breast cancer Women without a diagnosis of breast cancer
Knowledge: risk factors,
signs, symptoms,
source and adequacy
of information
Barriers Misconceptions and inaccuracies in risk factor Misconceptions and inaccuracies in risk factor
knowledge (e.g., germs) knowledge (e.g., microwaving of refrigerated
food, eating hot food packaged in plastics,
eating spiced food or wheat products, having
big breasts, wearing brassieres with
underwire, wearing tight brassieres, keeping
mobile phones next to the breast, keeping
money in brassiere or next to the breast, men
sucking women’s breasts, wearing of
second-hand brassieres without washing and
repeatedly wearing brassieres without
washing, and not going for regular screening)
Facilitators Knowledge about breast cancer (all participants Knowledge about breast cancer (all participants
had heard about breast cancer: it is an had heard about breast cancer: it is an
abnormal growth of cells) abnormal growth of cells)
Knowledge of risk factors: some foods, family Knowledge of risk factors: some foods, family
planning and birth control methods planning and birth control methods
Knowledge of signs and symptoms (breast Knowledge of risk factors (stress, genetics,
growth or lump, itch on the breast) alcohol consumption and smoking)
Available sources of information (health workers, Knowledge of signs and symptoms (breast lump)
pastors, Internet, books) Available sources of information (family, friends,
neighbors, workshops, social media,
newspapers, television)
Access to care
Barriers Cost of travel, cost of care, inadequate insurance Cost of travel, cost of care, inadequate insurance
covers, expensive private insurance, coverage, expensive private insurance,
discrimination by private insurers discrimination by private insurers, distance to
Hinderance to immediate care upon diagnosis facility
caused by denial and fear
Inadequate and costly rehabilitation items
(prosthesis and brassieres)
Facilitators Choice of facility for care influenced by quality of Familiarity with service provider, social media
care, waiting period, communication with consultations on appropriate caregivers,
health care givers, drug availability availability of all services at the same facility,
drug availability
Breast cancer diagnosis
and treatment (women
diagnosed with breast
cancer) or breast cancer
screening (women not
diagnosed with
breast cancer)
Barriers Delayed diagnosis, delayed treatment, poor Reason to avoid screening: fear of mastectomy
communication of diagnosis by health care
provider, poor communication on financial
implications causing mistrust between patients
and caregivers, stigma, side effects of treatment
Facilitators Good communication by health care provide, Reasons to go for screening: cancer is a killer
social support systems (family, friends, disease, fear of mastectomy upon late
religion, and religious leaders) diagnosis, when involved in community
mobilization for screening, when close
relatives are diagnosed (hereditary disease)
Anxiety of not knowing their status

her breasts but “the nurses kept saying it was milk”— felt “not very fine” and decided to seek another opinion.
diagnosis was delayed to stage 3B. Another participant from She had magnetic resonance imaging, then fine needle aspi-
the same group who knew about BC as a teenager when ration followed by a biopsy. “I was given my results in an
her mother was diagnosed said that it took 2 years for her unsealed envelope and when I checked on my way out of
own diagnosis to be made. It was a painless lump. Her doc- the doctor’s clinic, my diagnosis was CA Breast.” In the
tor noticed masses in her breast upon a mammogram and same group, a participant went to a gynecologist because in
asked her not to panic—“it was scar tissue.” Later on, she her opinion, “breast issues are a gynecology issue.” She was

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Gakunga, Kinyanjui, Ali et al. 1553

given vitamin A. She later visited a private hospital because and was in denial for 6 months. Another participant said that
the public hospital had long queues, and her diagnosis “I googled what malignancy means and I knew I was dying
was made. soon.” It took her 1 week of searching for information to
understand the surgery process before a nurse advised her to
Barrier 3: Inadequate Sources of and Information on see an oncologist before surgery. A third participant took
Cancer 2 weeks, within which she did not believe that the results
Even with the sources of information listed in Table 3, par- were hers. She had the tests repeated, then she was “ready
ticipants expressed general inadequacy of the information: for anything” (acceptance). Other periods of delay reported
“is breast cancer communicable?” (LSES), “does oral sex were 2 days in complete denial then 2 months before seeking
cause cancer?” (LSES), “what is the Kenyan government treatment, 3 months, and 5–6 months, respectively. There
doing to reduce the prevalence and delay of treatment of were some participants from the BCa-LSES group who sought
cancer in the country?” (LSES), “the government should treatment immediately.
enlighten people in the rural areas about cancer; it bothers
me that these people are ignorant” (BCa-LSES), “most peo- Side Effects of Treatment. Treatment side effects were
ple think treatment is only chemotherapy and don’t know described as a problem with the second chemotherapy cycle,
about the complementary” (HSES), “doctors need to advise which almost made one participant give up on treatment. Par-
on diet and nutrition … not just medication and surgeries,” ticipants experienced lowered immunity and hemoglobin levels,
“people do not know about palliative care” (HSES). “The swollen arm, pain in the bones on the side with cancer, numb-
process from screening to treatment should be clear to the ness in the hands, heat flashes in the head, problems in the
patient, explanation of risks of treatment especially on fertil- bones, issues with blood flow, a weak hand, pain in the joints,
ity to be done” (BCa-HSES), “patients need to have informa- menopause or “disappeared monthly periods,” and memory
tion, what is the road map, i.e., possible outcomes; risks; lapses.
childbirth” (BCa-HSES), “who should do it (give information)?
at what point? should it be a counselor, oncologist? this Barrier 5: Access and Cost of Care
should be clear … before chemo, [the patient] should be The average travel time to health facilities for cancer care
called together with her husband to be explained to that sex was 1 hour with a mean transport cost of about U.S. $2.00
life suffers” (BCa-HSES), and “fertility risks to be explained to for a return trip by public transport. It was at times difficult
young women” (BCa-HSES). to reach the health facility if the respondents had no money
There were suggestions from the HSES group to “package (BCa-LSES).
the information (on cancer) in a way that is understandable …. To choose a health facility, the LSES group considered prox-
languages … for different audiences.” Current “information is imity to their residences, quality of care provided, service pro-
not adequate … should go on public campaigns/national vider’s attitude, a facility with “all services under one roof,”
announcements … (like) polio, HIV/AIDS … package [informa- familiarity with facility health workers, medicine availability,
tion] appropriately … cancer affects everyone … have mass cam- short waiting time, and affordability. Most of the participants in
paigns, not to wait for October … once a year is not enough.” the HSES group did not have a personal doctor, and if they
needed a check-up, they would look for recommendations from
Barrier 4: Experience with Treatment social media groups. They would not just walk into any clinic.
Communication of Diagnosis and Treatment Plan. For the BCa-LSES participants, choice of service provider varied
Participants had varied reactions to the communication for various reasons: “though [X] hospital is expensive, I went
about their diagnosis by health providers: “I was trauma- there because the doctors in public health facilities were on
tized by the way the diagnosis was presented to me. I chan- strike,” “the need for immediate treatment made me go to a pri-
ged the doctor” and “I was handed my diagnosis without vate hospital,” “one may find treatment machines at [X] hospital
any counseling” (BCa-HSES). A participant from the BCa- faulty and because there is need for consistency in treatment,
HSES group was told by her oncologist that “your cancer is one opts to go to a private health facility,” “[X] facility staff listen
a very bad cancer. It does not respond to chemo, it is really to patients,” “some doctors in public facilities just write and they
bad.” She was devastated. However, the same oncologist do not talk to patients; they do not allow conversations
explained the treatment plan well and she also “googled” between themselves and patients saying that the patients are
(searched the Internet). Another participant was not counseled too many and there is therefore no time, so you find that one
on how long the treatment was going to take and later realized does not have the time to express themselves,” “doctors in pub-
that it was a long process (BCa-LSES). lic facilities are not bad but one may need an interpreter,” and
A participant said, “I had a wonderful experience with “nurses at [X] hospital sometimes cause delays.” Medicine avail-
the doctor, oncologist and surgeon.” This participant was an ability also influenced choice of health care facility.
employee of the hospital where her treatment was given. All participants agreed that services were expensive. Cop-
She understood the reason why she had to lose a breast. ing financially included going for subsidized screening, buying
Her surgeon encouraged her by assuring her that “people chemotherapy medicines from the chemist and taking them
have lived for over 20 years” (BCa-HSES) after surgery. to the oncologist, fundraising, employers’ contributions, out
of pocket expenditures even if one had insurance, enrolling
Delays in Treatment. The immediate reaction upon diagnosis on the National Hospital Insurance Fund (NHIF), and using
for one participant from the BCa-HSES group was that “If I go private insurance, although a participant was told to her face
to hospital, I’m so dead.” She tried to negotiate within herself that she was a high risk and should not have been covered

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1554 Breast Cancer Management in Kenya

by insurance. She said, “discrimination by insurance compa- diagnoses), and “I had been told that if one is touched with a
nies is real … individual cover is quite difficult especially if knife, meaning if one is operated on, there are negative con-
one has cancer but group cover happens” (BCa-HSES). Partic- sequences and so I decided to go to a traditional healer but
ipants also indicated that “NHIF needs to streamline the can- then I was advised in good time” (BCa-LSES). It was men-
cer funding because even if they say they fund chemo, tioned that private sector employers “usually sack people
having cancer you can’t be sure, cancer is like a Damocles’ when they get sick due to absenteeism” (BCa-HSES). On the
sword—it can come back again and you need to keep check- home front, it was reported that a husband got advice to re-
ing (regular testing), NHIF should re-look into the coverage. marry prior to his wife’s death and that another husband
I was lucky my employer covered everything” and asked, said, “I don’t want to sleep with a dead body” (BCa-LSES).
“why can’t they treat cancer patients for free like HIV
patients?” (BCa-HSES).
Mistrust exists between patients and the health providers DISCUSSION
concerning financial issues. A participant said that she had We sought to identify barriers and facilitators to breast can-
realized that doctors “are not treating in the interest of the cer early detection and subsequent treatment by combining
patient. Every doctor will tell you what is good for them in focus group discussions and a hermeneutic phenomenology
order to make money.” The general observation was that approach among women with and without a diagnosis of
doctors based their treatment on perceived financial ability breast cancer in Kenya. The focus groups were further cate-
of the patient and that hospitals, especially private ones, gorized by socioeconomic status. Using standardized discus-
aimed to benefit financially by misadvising patients on tests sion guides, we found that those without a BC diagnosis
or treatments to take. For example, one may not have seemed to have more misconceptions and inaccuracies in
needed surgery but was still made to go through it, and their knowledge about cancer than those who had had a BC
could even have died from the operation. diagnosis. This could be because those with a diagnosis
have generally had more interaction with information as
Barrier 6: Stigma they sought help. Studies in SSA show that general knowl-
A woman was exposed to public stigma when, because of edge and awareness about cancer is good but inadequate
financial constraints, she organized a fundraising: “due to [4, 11, 14]. Inadequate knowledge is associated with late
fundraising women got curious and would stare at me and I presentation, late detection, and poor outcomes [16]. In
had to change my residence” (BCa-HSES). Another woman our study, a lump in the breast seemed to be the main
said that “only the immediate family was informed. I had to known symptom of BC. Knowledge of symptoms and signs
lie due to stigma. Those in rural areas think that breast cancer based on recall methods, like in our case, is generally lower
is a death sentence” (BCa-HSES). At one participant’s work- than in studies that use recognition methods [18]. Studies
place, cancer was associated with death because an employee in Kenya using recognition methods have revealed good
had died of liver cancer. Colleagues perceived people with a knowledge of other symptoms [7, 19].
diagnosis of cancer as very sick people who were expected to Social support from family, friends, and religious per-
die. She said, “I had to keep it a secret at the workplace. I had sons and organizations is a facilitator to BCC [10, 11]. Our
to lie that it was the lump that was removed and I would findings support this conclusion, but we also report situa-
sometimes find people staring directly at my breast” (BCa- tions similar to those in Uganda in which husbands’ support
HSES). “Some people discriminate against those who are sick was lacking [10]. Religious persons were a dependable cop-
and think that one can infect them and you will even find that ing support. Some women in SSA make their first stop at
some of the friends will step aside or avoid the sick person” their churches before seeking treatment [20]. This support
(BCa-LSES). could be leveraged from the time of diagnosis as an adjunct
to conventional care.
Insensitive disclosure of BC diagnoses by health providers
Facilitators
to patients has been reported [10], and our findings concur.
Psychosocial Support This may result from time constraints and heavy workload
All the participants who had been diagnosed with BC agreed for health providers and lack of knowledge of how to com-
that they needed social support—friends, family, church, municate bad news. Inadequate or lack of counseling at the
employers, and support groups. A participant from the BCa- time of diagnosis contributed to devastation and delay in
HSES group belonged to a support group where they had seeking treatment for many women.
activities like “dancing in our night gowns,” and this made Fear affected women both with and without a BC diag-
her very happy. Individual coping was enhanced by keeping nosis. Fear of mastectomy and fear of dying from cancer
“a strong faith” (religion), avoiding negative people and toxic are common barriers to BCC in SSA [4, 11–13]. There is also
friends, positive thinking, and reading positive books. Health fear of exposure to public stigma upon disclosure of one’s
providers also encouraged patients: “I was diagnosed at diagnosis [10]. This may hinder patients and their families
stage 3 and the nurse attending to me told me that, ‘you are from accessing social and financial support.
not God; cancer has no medication; you are the medicine Known barriers to care such as cost, distance to equipped
and so you need to take it positively; everyone has their day health facilities [4, 11, 14], and strikes by hospital staff [11]
and it’s not only cancer that kills,’” “Dr. [X] is good and has were discussed. Health system barriers have extensively fea-
taken care of me since I got sick and it’s now 8 years” (BCa- tured in Kenyan government documents [21–23]. Kenya has
LSES—this participant had had two primary breast cancer adopted universal health coverage aiming to improve health

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Gakunga, Kinyanjui, Ali et al. 1555

Table 4. Recommended interventions and expected outcomes for breast cancer early detection and subsequent treatment
in Kenya
Recommended interventions Expected outcomes
Implement accredited education and awareness programs Increased knowledge will enhance screening uptake and
through recommended platforms—radio, television, ease public navigation through the health system
websites, and social media
Include mandatory counseling during screening and at Alleviate fear and anxiety, reduce delays to seeking care,
diagnosis and allow patients to make informed choices about
treatment plans
Advocate for increased and comprehensive health Reduce delays to care attributable to cost, minimize
insurance coverage catastrophic expenditures on cancer diagnosis, treatment,
and survivorship care
Train and involve religious leaders in the continuum of Enhance psychosocial support to patients and their
care families; at the same time ease the health system on time
and other resources required for psychosocial support
Update health care providers on national screening Reduce delays at the diagnosis stage. Enhance efficient
guidelines; train them on technical skills to enhance and effective treatment, communication and trust
prompt diagnosis, effective treatment, and care and on between health care providers and patients and families
nontechnical skills such as communication and awareness
of patients’ context

systems and eliminate catastrophic health expenditures. NHIF CONCLUSION

has substantially eased affordability by covering some diag- Inadequate knowledge among both health providers and the
nostics and treatment costs. However, recommendations were public, inadequate awareness and screening services, cost of
that NHIF needs to cover all costs—screening, diagnosis, treat- services, and communication between patients and their
ment, and palliative care. health providers were key barriers. Social and spiritual support
Tailored educative messages may reach those of the by religious persons was accessible. In using hermeneutic phe-
LSES through face-to-face gatherings, whereas social media, nomenology, we hope that every reader will individually iden-
Internet, and television may work for those of HSES. Studies tify phenomena from the participants’ verbatim expressions
in Kenya have shown that younger women prefer education and explore interventions in their own spheres of expertise.
through electronic media and community health workers For example, researchers may develop studies from as many
(CHWs), rural women prefer information through CHWs, deductions as they can make from the verbatim writings, pol-
and urban women are inclined to media and mother-child icy makers may include mandatory counseling during screen-
clinics [4]. Sixty-six percent of women prefer their health ings and at diagnosis, educationists may include soft skills of
providers to be sources of educative messages [24]. Educa- communication in teaching curricula, managers in industry
tive messages sent to women, men, and children may elimi- may examine value chains to identify processes and inputs
nate fear and misconceptions, enhance self-awareness, and that can be modified to reduce costs, and financial counseling
reduce stigma. Health providers need education to avoid could help patients make informed choices on treatment and
missed opportunities for early detection and to avoid wrong survivorship plans with understanding of cost implications.
diagnosis and delayed diagnosis [11]. Educating health pro-
viders on soft skills of communicating diagnoses, treatment
plans and prognosis, and money matters may cultivate
ACKNOWLEDGMENTS
mutual trust and is consistent with other study recommen-
The authors thank all participants; RTI International for
dations that physicians provide sensitive disclosure through
funding the study; Kenya Hospices and Palliative Care Associa-
explanation of the disease, treatment, and prognosis [10].
tion (KEHPCA) and Kenya Cancer Association (KENCANSA) for
This study was carried out in Nairobi and its environs
selecting participants and organizing focus groups; and Ken-
where most of the cancer care services in Kenya are found
yatta National Hospital (KNH), Nairobi Radiotherapy & Cancer
and may therefore not be generalizable. However, we were
Centre, and Kibera Community Self Help Project (KICOSHEP)
able to gather information on BCC that is similar to other
for identifying participants.
studies carried out in Kenya and other SSA countries [3–16].
Women’s views on aspects of BCC and their recommenda-
tions are considered and presented in Table 4 with expected
outcomes. Each of our four groups was unique by BC diagno- AUTHOR CONTRIBUTIONS
Conception/design: Robai Gakunga, Zipporah Ali, Anne Korir, Sujha
sis and socioeconomic status. Using standardized discussion Subramanian
guides, we found some similarities and differences in percep- Provision of study material or patients: Asaph Kinyanjui, Zipporah Ali, Emily
Ochieng’, Nancy Gikaara, Florence Maluni, Anne Korir
tions while noting that even CHWs in the LSES group had lim- Collection and/or assembly of data: Robai Gakunga, Emily Ochieng’, Nancy
ited knowledge on BC. We provided adequate time to exhaust Gikaara, Florence Maluni, Anne Korir, Sujha Subramanian
discussion on each concept and have reported many partici- Data analysis and interpretation: Robai Gakunga, Asaph Kinyanjui, Zipporah
Ali, Emily Ochieng’, Nancy Gikaara, Florence Maluni, David Wata, Mercy
pants’ statements verbatim. We encourage further research Kyeng’, Anne Korir, Sujha Subramanian
to ascertain saturation of themes. Manuscript writing: Robai Gakunga, Asaph Kinyanjui, Sujha Subramanian

www.TheOncologist.com © AlphaMed Press 2019

1556 Breast Cancer Management in Kenya

Final approval of manuscript: Robai Gakunga, Asaph Kinyanjui, Zipporah

Ali, Emily Ochieng’, Nancy Gikaara, Florence Maluni, David Wata, Mercy DISCLOSURES
Kyeng’, Anne Korir, Sujha Subramanian The authors indicated no financial relationships.

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