Cervical cancer: the route from signs and symptoms to treatment in South Africa. Abstract: In South Africa, in 2005-06, 100% of primary health care clinics in South Africa had health professionals trained to conduct Pap smears, yet the screening rate was only 1.3% and one in 26 women develop cervical cancer during their lifetime. Many women admitted to oncology wards ore at such an advanced stage of disease that palliation is the only treatment option left. The purpose of this qualitative study in 2007, using semi-structured interviews with 15 women with advanced cervical cancer, was to understand the routes they followed from first signs and symptoms of disease to receiving treatment. The willingness of the women to be diagnosed was a positive finding of the study. The women did seek treatment, often more than once, and were not solely responsible for presenting late. The average number of months from first contact with a health care professional until diagnosis was 17.3, ranging from 11.8 months for urban participants to 28.4 months for rural participants, and three to seven months from diagnosis to referral for treatment. Lack of knowledge and awareness among health care professionals resulted in a low suspicion of cancer and misdiagnosis. A national cervical cancer strategy, including health education and re-training of health professionals, should be made a priority. Resume
En 2005-06, 100% des dispensaires de soins de sante primaires sud-africains disposaient de personnel forme aux frottis, pourtant le
taux de depistage n'etait que de 1,3% et une femme sur 26 developpe un cancer du col de l'uterus pendant sa vie. Beaucoup des femmes hospitalisees en oncologie sont a un stade si avance de la maladie que des soins palliatifs sont la seule option. L'objet de cette etude qualitative, menee au cours d'entretiens semistructures avec 15 femmes presentant un cancer avance du col de l'uterus, etait de comprendre leur cheminement depuis les premiers signes de la maladie jusqu'au traitement. L'une des conclusions positives de l'etude est que les femmes souhaitaient etre diagnostiquees. Elles avaient bien demande un traitement, souvent a plusieurs reprises, et n'etaient pas seules responsables de leur presentation tardive. Le nombre de mois depuis le premier contact avec un soignant jusqu'au diagnostic etait en moyenne de 17,3 (11,8 mois pour les participantes urbaines et 28,4 mois pour les rurales), et de trois a sept mois depuis le diagnostic jusqu'a l'aiguillage vers un traitement. Le manque de connaissances et la sensibilisation insuffisante des soignants ont abouti a une faible suspicion de cancer et a un diagnostic errone. Une strategie nationale en matiere de cancer du col de l'uterus, avec notamment des programmes d'education sanitaire et de recyclage des professionnels de sante, devrait etre prioritaire.
Resumen En Sudafrica, en 2005-06, el 100% de las clinicas de primer nivel de atencion tenian profesionales de la salud capacitados para realizar la prueba de Papanicolaou, pero la tasa de tamizaje era solo del 1.3% y una de cada 26 mujeres presenta cancer cervical durante su vida. Muchas mujeres admitidas en los pisos de oncologia presentan una etapa tan
avanzada de enfermedad, que la paliacion es la unica opcion de tratamiento posible. El proposito de este estudio cualitativo en 2007, que utilizo entrevistas semiestructuradas con 15 mujeres con cancer cervical avanzado, era entender las rutas que siguieron desde los primeros signos y sintomas de enfermedad hasta el tratamiento recibido. La buena voluntad de las mujeres para ser diagnosticadas fue un resultado positivo del estudio. Las mujeres buscaron tratamiento, a menudo mas de una vez, y no eran las unicas responsables de presentarse tarde. El numero promedio de meses desde el primer contacto con un profesional de la salud hasta el diagnostico fue de 17.3, variando desde 11.8 meses para las participantes urbanas hasta 28.4 meses para las rurales, y tres a siete meses desde el diagnostico hasta la referencia para el tratamiento. La falta de conocimiento y conciencia entre los profesionales de la salud resulto en baja sospecha de cancer y diagnostico errado. Se debe dar prioridad a una estrategia nacional de cancer cervical, que incluya educacion sobre la salud y la re-capacitacion de los profesionales de la salud.
Keywords: cervical cancer, treatment-seeking behaviour, health education, training of providers, South Africa
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CANCER of the cervix is the most prevalent malignancy among women in developing countries, and also the most common AIDS-related cancer in women. (1) Cronje and Beyer (2) estimate that 1 in 26 women in South
Africa will be diagnosed with invasive cervical cancer during their lifetime. Cervical cancer is diagnosed as early as 15 years of age, but most women will be diagnosed with cervical cancer when they are aged 30-39 years or 60-69 years. (3)
Although cancer of the cervix is the most prevalent cancer, it is also the cancer that is most preventable through screening and treatment of pre-cancerous lesions, (4) and could be virtually eradicated in South Africa if screening and treatment were adequate. (5) The South African cervical screening programme commenced in 2001. It calls for three free Pap smears in a woman's life-time, starting at the age of 30, at ten-year intervals. (6,7) The programme is predicted to halve the incidence of cervical cancer if it achieves over 75% coverage. (8)
Culture plays a role in how disease is defined, how perceptions about diseases are formed and how consultation for health care is obtained. Many African cultures still believe that cancer is a "white man's disease". (9) Some black women consider cervical cancer to be a secret disease, as their culture forbids them to talk about anything that has to do with the reproductive organs. (10) Wood, Jewkes and Abrahams (11) emphasise that many black women patients continue to view "womb cancer", as they call it, as terminal. They use the words "it kills" to describe the severity of the disease, that they have "never heard of anyone surviving it" and that "women die, even if consulting doctors". Cancer is commonly associated by them with severe pain and suffering. Without
pain, most women lack a sense of certainty about what they are experiencing. Martinez (12) reports that the absence of pain as an early sign and symptom of cervical cancer was "confusing" to women she interviewed. Cervical cancer is often asymptomatic, leaving women with the anomaly of feeling healthy even though they have a life-threatening disease. (12) In a study by Maree and Wright (13) at Ga-Rankuwa, a semi-urban area with a predominantly black population, only 45% of women interviewed had any knowledge of cervical cancer, and only 50% had heard of Pap smears. There are also external factors and personal reasons that influence cervical screening. These include poverty, low educational levels, long distances to clinics, lack of transportation, communication and social isolation. (9) Some women delay screening due to personal reasons such as fear of exposure during the Pap smear, the association of cervical cancer with promiscuity, sex of the physician and age of the health care worker. (11,14)
The Department of Radiation oncology in the academic hospital in Gauteng where our study took place experiences a high frequency of advanced cervical cancer among women admitted for treatment. Patients from satellite hospitals as well as other hospital wards are referred there for radiotherapy on an outpatient basis. This research, which took place in 2007, aimed to gain an understanding of the routes that women presenting with advanced cervical cancer followed, from experiencing the first signs and symptoms of the disease until they received radiotherapy. Understanding this will assist health care professionals
to develop evidence-based strategies to reduce the late admission of women with advanced cervical cancer.
Methodology and participants
The research strategy was exploratory as there was no contemporary literature available on the research problem. The design was qualitative phenomenological, which is based on the understanding that each participant has his/her own subjective reality, and that experience is unique to the individual. (15)
The study population consisted of women diagnosed with advanced cervical cancer (Stage II Band worse) who were receiving radiotherapy at the hospital. The inclusion criteria for participation were a diagnosis of advanced cervical cancer, receiving radiotherapy at the hospital concerned and willingness to participate in the study. Women who agreed to participate were interviewed in a private room in the department, with only the researcher and an interpreter present. Interviews took place from February to April 2007. The sampling method was purposive and convenient. (15) Fifteen participants were interviewed. A tape recorder was used to record the interviews, and the researcher also made notes. Two hours were allocated to each interview, to allow enough time for the women to share their lived experience. Interviews were transcribed on the day of the interview. Saturation was achieved after the first 12 interviews.
The data-gathering method was self-report using a semi-structured interview with two sections. The first was devoted to demographic information; the second covered knowledge of cervical cancer, duration of signs and symptoms, feelings about signs and symptoms, first disclosure, health information received from health care workers or other sources of support, health care contact including traditional healers, self-care actions, role of support structures, and satisfaction with routes. Although cervical cancer is the most common cancer in HIV positive women, women were not asked about their HIV status. To analyse the data, content analysis was conducted using open coding (16) and Tesch's approach. (17) The ethical principles of anonymity and confidentiality were followed. A trusting relationship existed between the participants and the researcher and interpreters, as the participants were being nursed by the researcher and interpreters while in hospital. The Ethics Committee of Tshwane University of Technology and the academic hospital approved the proposal. Narratives of all 15 participants are reflected in the findings; pseudonyms are used. The general characteristics of the participants are presented in Table 1.
Findings
Experience of signs and symptoms and diagnosis The body is sacred and fundamental to human existence and gives meaning to the world around us. Disturbing the relationship between the body and the world overwhelms the existence of the person. (18) This was indeed true for the women we interviewed. They instinctively knew that something was wrong with them, but lacked the knowledge or awareness of what was
required to prevent pre-cancerous lesions from developing into advanced cervical cancer.
Most complained of bleeding and an offensive vaginal discharge, which are early signs and symptoms of cervical cancer. (5,12,19,20). Three participants described the bleeding as follows:
"The blood carne out. Lots and lots of blood, lots and lots of days and it stank." (Elizabeth, 42)
"I was bleeding, very much, more than the normal menstruation, it just comes and goes, mostly it was blood clots and it was painful, it was painful." (Esther, 35)
"The blood that came out was so much that I could not go anywhere. All I did was stay at home. I was scared that the blood would come out if I am amongst people and the blood smells so funny." (Nomsa, 39)
The women's emotional responses to the signs and symptoms they were experiencing were mostly negative. These included concern, embarrassment, sadness and isolation.
"I felt so embarrassed, it happened one day when I was going to work ... I jumped out of the taxi, I was wearing a nappy, I wet myself, I had to go back home and change clothes and the smell was so
bad." (Grace, 66)
"Due to the smell of the discharge the people in the taxi will more to the other side." (Nomsa, 39)
"I do not like it anymore to talk about this business. I am sick and tired of the mess and that I had to put up with this for such a long time. You always feel dirty, out of place, uncomfortable and you can do nothing about it." (Judy, 71)
The feeling of isolation was not only subjectively experienced; two of the women said they were shunned by the community they lived in as well:
"Nobody visited me. They thought the disease was contagious." (Violet, 41)
Some women felt despair and sadness:
"I cried; asking myself; why me, having HIV and cancer at the same time." (Nomsa, 39)
Three women expressed feelings of relief after having been diagnosed:
"That's when I had made peace with everything, because
then I knew what was eating me up from the inside, it was the cancer and it was treatable." (Esther, 35)
Health professionals, especially nurses, need to understand the range of emotions women have to cope with, and that sometimes these are contradictory. Even though it might seem to be a paradox, patients may feel relieved to be diagnosed, even with a life-threatening disease, because it validates their illness and their reasons for seeking help, and confirms their suspicion that something is wrong with them. (21)
Months from the first diagnosable opportunity to diagnosis and treatment
Table 2 shows the signs and symptoms of cervical cancer experienced by the women, the time lapse before they received correct treatment and the stage of disease at diagnosis. The average number of months from the first diagnosable opportunity (contact with a health care professional due to the signs and Gynecologist in Gauteng symptoms of cervical cancer) until the women were diagnosed, was 17.3 months, ranging from 28.4 months for rural dwellers to 11.8 months for women living in an urban area. In addition, those living in the Gauteng Province waited 2.8 months between obtaining a diagnosis and being referred to the hospital for treatment, compared to 6.5 months for those who were referred from provincial hospitals outside Gauteng.
The women's initial contacts with the health care system did
not result in a correct diagnosis or treatment, whether by a registered professional nurse, medical practitioner or traditional healer. The reasons for this ranged from their being asymptomatic, the nature of cervical cancer during the initial stages, the lack of suspicion and insight on the part of professionals during consultations, and the fact that some women did not report their main symptoms during a consultation.
Willingness to be diagnosed, mismanagement and traditional healers
The women repeatedly sought health care before they were eventually diagnosed and treated. Their willingness to be diagnosed must be considered as a positive finding of this study and acted upon to the maximum by the health care system. In pursuit of a diagnosis, all but one woman initially consulted someone in the health care system. Their preferred health service provider was not a traditional healer, but rather the formal health care system.
Unfortunately, willingness to be diagnosed did not lead to a diagnosis before a lot of time had lapsed. The majority of the participants were mismanaged by health care professionals, from the first consultation onwards, even though they were already experiencing signs and symptoms of cervical cancer (Table 2).
"The first time I went to the clinic, nobody listened to me. They gave me pain tablets. After 1 went to the clinic, monthly, from
June to the next year's February, complaining of the vaginal bleeding and vaginal discharge, I decided to go to the nearest hospital casualty department." (Zandile, 43)
"I complained at the clinic about heavier bleeding and bleeding in between periods; they gave me pain medicine." (Violet, 41)
"I complained at the clinic that I bleed after sex and bleed a lot; they gave me medicine for pain." (Sarah, 37)
"I was complaining to the private doctors about lower back pain and irregular menstrual bleedings with blood clots, every month, for more than a year. They only gave me pain medicine." (Elizabeth, 42)
Negative emotions, especially embarrassment and shame, led some women not to report the real nature of their problems but only to report general problems such as fatigue, headaches and lower back pain. These symptoms are nebulous and would not lead to a correct diagnosis without a high level of suspicion of and insight into cervical cancer.
"I went to the clinic every month for my blood pressure medication, I was too ashamed to tell the nurses about the vaginal bleedings and offensive vaginal discharges I had experienced. I only complained of headache and fatigue." (Nomvula, 49)
Traditional healers were only consulted as a result of advice from support persons. The group were divided in terms of their belief in traditional healers. Most of the women consulted a traditional healer only after the health care system had failed them. Gladys (aged 48) was such a woman. She came from a rural area in the Mpumalanga Province. She experienced the first symptoms of cervical cancer in November 2004, when she had irregular vaginal bleeding, an offensive discharge and post-coital bleeding. She was diagnosed with Stage IVA cervical cancer in September 2006 at her nearest hospital. Earlier she had told her daughter about the symptoms she was experiencing. She went to her nearest primary health clinic in January 2005, where she was treated for a sexually transmitted infection. When the symptoms became more severe, she told her mother, who encouraged her to consult a traditional healer.
According to Gladys, the traditional healer said that she had an abscess that was causing the discharge and bleeding. At first, after having taken the muti (medicine) given to her by the traditional healer, her signs and symptoms improved, but after six months her condition worsened. She went back to the traditional healer, who said that she was not "taking his medicine well". Gladys then decided to go back to the primary health care clinic where she was once again treated for a sexually transmitted infection. She then bought herbal remedies to boost her immune system.
She went for a consultation at the primary health care clinic for the third time in January 2006. The registered professional nurse at the
clinic wanted to do a Pap smear, but Gladys's vaginal bleeding was too severe and the Pap smear was postponed. When it was done two weeks later, the results were "not clear". Gladys was referred to the nearest hospital, but she had started believing her mother, who said that she was cursed. "I also thought that this disease was from the demons. If the machines cannot see what is wrong with me, maybe my mother is right in saying that I am cursed." She did not present to the hospital for six more months. "They said I must go to the nearest hospital, but I waited six months; I was lazy." She went to her nearest hospital in July 2006 when the signs and symptoms became "too much" to manage. At the hospital, she underwent a biopsy and cervical cancer was diagnosed in September 2006. She was referred to the tertiary hospital where all the procedures were repeated. She was admitted to the Radiation Oncology Department in January 2007.
Fear of the hospital was also a motivation to consult a traditional healer, even after diagnosis.
"After I was diagnosed with the cancer, I was afraid to go to the hospital, because everybody was saying that you will not come back, so I went to the traditional healer." (Martha, 47)
Role of support structures
The first person the women told about their symptoms was one with whom they had a trusting relationship, including a family member,
firstly mothers and daughters and secondly eldest sons, or a boyfriend, doctor, employer, woman friend or neighbour. The response they got from that person played a major role in the route that they then followed. Eleven of 15 women were encouraged to consult a biomedical health care practitioner. Only one reported that she had to go to a traditional healer via the chief of their cultural group.
The support received from husbands or partners and immediate family members could be positive or negative.
"He was very understanding; he said where there is blood, there is something wrong." (Gladys, 48)
"He accused me of having other boyfriends." (Violet, 41)
"After I told him about the diagnosis he is pulling back. He said that I have infected him with the cancer as well." (Beauty, 30)
"My son refused to take me to the hospital; he said the hospital was too far, he took me to the traditional healer." (Grace, 66)
Support from the community and church was also variable. Six of the participants were of the opinion that they were not supported by the community, whilst only one felt that the church did not support her. In
some instances, participants' spiritual experience during the time was supportive. Some however, felt abandoned.
"They encouraged me to go to the clinic." (Catherine, 48)
"My neighbour said that I must go to the hospital immediately, because if the cancer is small I will survive, but if the cancer is big, I will die." (Rose, 54)
"All the church members came to see me at my house; the house was full of people, they sang and prayed." (Zandile, 43)
"My friends said that I must not worry about the vaginal bleeding, my body is cleansing itself" (Nomvula, 49)
"I could not go to the church for 11 months, because women are not allowed in the church when they menstruate." (Violet, 41)
"I know that God loves me." (Nomsa, 39)
"God does not love me any more; I am alone in this world." (Rose, 54)
Their workplace was also mentioned as part of support. Support could be received from an employer or colleague, but self-employed women did not seem to have the same support system as women who were employed
full-time.
"My employer was the first person that I told about the bleeding. She took me immediately to the doctor and paid for it." (Queen, 69)
Dissatisfaction with the route followed
Eleven participants expressed dissatisfaction with their experience leading up to treatment. They mentioned their lack of knowledge of the disease, missed opportunities to be diagnosed and the poor referral system for health care in South Africa.
"I am not satisfied with the way they treated me at the clinic. They could have done the Pap smear that very first day that I was there." (Sarah, 37)
"Maybe I have wasted my time, going to the doctors, they could have just sent me to the clinic, and the registered professional nurses could have done a Pap smear." (Esther, 35)
"If I had known that this disease is not painful I would have told my employer earlier." (Queen, 69)
"They sent me from one hospital to another, and nobody helped me." (Judy, 71)
Feelings of satisfaction give a feeling of peace in the context of everyday struggles. (22) Lack of knowledge of cervical cancer and being mismanaged by the health care system robbed the women of peace when an extra burden was added to their everyday struggles.
Discussion
The study supports previous findings that South African women lack awareness of cervical cancer as a disease. (13,23) Even the two participants who did know about cervical cancer did not relate the symptoms they were experiencing to it. This lack of connection, even among women with a knowledge of the symptoms, has also been found in the Netherlands. (24) In 2002 in Dar es Salaam, (25) researchers also found that women had a low level of knowledge of the basic symptoms of cervical cancer. More than 70% were illiterate or had not completed primary school and more than 90% presented with advanced cervical cancer. Seth et al (26) found that the only factor that was positively associated with the correct knowledge of common cancers among urban slum dwellers in India was more than eight years of education. Nine of the participants in our study had less than eight years of education, but even those with a higher level of education presented with advanced cancer.
The women we interviewed really wanted to know what was wrong with them, but the majority had a low level of literacy. We want to ask whether they received any health education at all from the health care
professionals who examined them, or whether the health education provided was above their level of literacy. The need to take account of low literacy in South Africa has been emphasised by the Department of Health, (27) who found that eight million of the population would not benefit from existing written health promotional material due to limited literacy.
When considering health literacy, the situation is even bleaker. According to Scudder, (28) people's level of reading and understanding about health can be as much as five grades lower than the last school grade completed. People with limited health literacy tend to know less about cancer prevention, do not understand common cancer-related terminology and present with more advanced cancer than people with greater health literacy. (29) The only way to address this problem is to tailor cervical cancer prevention and early detection messages to the health literacy level of women and assess the impact on their behaviour. (30)
The women's initial contacts with the health care system did not result in a correct diagnosis or treatment, whether by a registered professional nurse, medical practitioner or traditional healer. The reasons for this ranged from their being asymptomatic, the nature of cervical cancer during the initial stages, the lack of suspicion and insight on the part of professionals during consultations, and the fact that some women did not report their main symptoms.
The age, sex and complaints of abnormal vaginal bleeding and offensive vaginal discharge experienced by the majority of the participants should have created suspicion of cervical cancer. Insight should have obliged health care providers to investigate by visualising the cervix. The fact is, however, that cervical cancer is not one of the top ten priorities of the South African National Department of Health. (27) The World Health Organization (20) is of the opinion that women's health needs, especially those not related to maternity or family planning, lack priority. (20) Despite the high incidence, morbidity and mortality of cervical cancer, the disease has still not received sufficient attention in many countries, including in South Africa. Priority status is more conducive to a high level of suspicion; without it, the risk increases that the patient may be misdiagnosed and mismanaged. The fact that during 2005-06, 100% of primary health care clinics in South Africa had health professionals who were trained to conduct Pap smears, and yet the screening rate was only 1.3%, (31) is indicative of the extent of the lack of priority.
Perceptions and cultural beliefs
Cultural beliefs that abnormal vaginal bleeding is caused by witchcraft, the body is cleansing itself or is contagious, still exist. Community leaders and traditional healers must also be educated about cervical cancer so that they can give accurate information to the community, a role in the referral of patients with cancer that would assist in increasing the level of suspicion and identification of the
disease, which is often overlooked. (32) The culture of interdependency in the community, which traditional healers area part of, is especially important in African cultures. (33)
The health care system
The role of the health care system was highlighted on several levels in this study, namely the role of the health care professionals, the referral system and health care policies. The vision of the Department of Health (27) is to provide accessible, caring and high-quality health care. How, then, can the average delay of more than 17 months from first signs and symptoms to correct diagnosis, and the delay in referral between diagnosis and treatment of three to seven months, be justified? Our findings compare negatively with those of a study in 1999 in Benin, where the average delay between presentation with symptoms and treatment was six to seven months, less than half the average time it took for our interviewees. (34) And even that is far too long.
Conclusion
This study provides evidence that women cannot be held solely responsible for presenting late with cervical cancer. Two other major contributors were the lack of suspicion of cancer on the part of health care professionals and the lack of priority given to cervical cancer by the Department of Health. Given the extent of morbidity and mortality
from cervical cancer in South Africa, a high level of suspicion of cervical cancer is imperative. Health care professionals in South Africa need to be re-trained to recognise the signs and symptoms of cervical cancer. It is also essential that the Department of Health evaluates its role in ensuring health promotion on and prevention of cervical cancer. Strategies should be implemented to increase awareness of cervical cancer locally and nationally. If the levels of knowledge and awareness are not raised, many women will continue to die unnecessarily before they are even 40 years old.
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