A Mixed Method Research to Identify Perceived Reasons and Solutions for Low Uptake of Cervical Cancer Screening in Urban Families of Bhopal Region

2.1. Study Setting

The study is a community based cross-sectional mixed method research with both quantitative and qualitative methods. For qualitative study we conducted focused group discussion of stake holders followed by deductive content analysis [11]. And for the quantitative part we assessed the knowledge, attitude, and practice of women through a structured questionnaire. To reach out to the target of cervical cancer screening, study was undertaken at community level in various blocks of Bhopal which is the capital city of Madhya Pradesh.

2.2. Participants

In a mixed research, questionnaire based interviews (quantitative method) and focused group discussion (qualitative method) were used to understand the perceived barriers to cervical cancer screeching in the urban population of Bhopal [12]. Participants were women aged between thirty and sixty years from urban residential areas and slums and health care professionals who can possibly encourage and administer cervical cancer screening like gynecologist and general practitioners.

2.3. Sampling Method and Sample Size

For the questionnaire, multistep cluster sampling was done and the sample size was the number of items in the questionnaire × 10.

For the qualitative research methods we use nonprobability sampling method; in this case we used purposive sampling method. Sample size was taken as the number of cases till saturation of responses that is where it stops yielding further new information [13].

2.4. Tool Development

A questionnaire verifying the knowledge, attitude, and practice of the women about present scenario of cervical cancer screening was developed by the researcher with dichotomous response (yes or no). After key informant interview with five gynecologists and 2 women eligible for cervical cancer screening a draft questionnaire was developed with 28 items. It was face validated by the experts of the fields like experienced gynecologists and epidemiologist. Eight items were removed for poor content validity and wording of few items was changed for ease of interpretation. Finally the tool contained 20 items with six items representing the demographic data with Kuppuswamy socioeconomic class. Thirteen items verified the “knowledge” of women towards cervical cancer, its risk factors, and vaccination. Each item was given a weightage according to its subjective importance for the laywomen from minimum of 1 to a maximum weightage of 5. The total score therefore could vary from a maximum of 38 (100%) and a minimum of 0 (0%). A score of ≥19 (≥50%) was considered “adequate” and women with scores ≥ 29 (≥75%) were considered “well aware.” The “practice” was assessed by the percentage of women who underwent cervical cancer screening. Before final administration the questionnaire was pilot tested on a small sample of women attending the gynecology outpatient departments in AIIMS Bhopal Hospital to identify ambiguous wording and double barreled questions.

2.5. Data Collection

Women with age between 30 and 60 years were approached in a door to door survey by interviewers in four wards of Bhopal city including two organized residential areas and two slums. After taking informed consent, women were requested to fill survey questionnaire developed for the purpose. A purposive sampling of women who participated in the survey was done and they were invited for focused group discussion (FGD) in a convenient time and place in the locality itself. FGD was conducted face to face by an interviewer trained in qualitative research. A group of 6 to 8 willing women were asked questions as per interview guide. A written consent was taken by all participants. The purpose of the study, the procedure to be followed, and its implications were explained to all participants. Proceedings were recorded on audio recorder enabled mobile phones. A transcript was prepared by the interviewer soon after finishing the FGD and cross-checked with the participants for approval. Five such FGDs were conducted with laywomen and four FGDs were conducted with health care professionals including gynecologist, medical graduates, and nursing staff. FGDs with different participants were conducted till the saturation of responses was met. Also a free listing exercise was done to identify major causes of low cervical cancer screening and possible solutions with all the FGD participants. Smith’s S (Smith’s saliency score) refers to the importance, representativeness, or prominence of items to individuals or to the group and is measured in three ways: word frequency across lists, word rank within lists, and a combination of these two [14]. Reasons with relatively high Smith’s S value were then pile sorted by equal number of participants for cluster analysis.

2.6. Data Analysis

The quantitative data will be analyzed using Microsoft Excel 2007™ (Washington, USA).

A summative approach to qualitative content analysis was undertaken to identify and quantify themes from the text data and infer meaning in the given context [15]. The method suggested by Graneheim and Lundman [16] was adopted. The procedure involved document preparation, open coding, grouping, categorization, and theme abstraction. Since the basic outline of the outcome on the study was known due to previous studies a deductive content analysis method was used. The units of analysis were women’s and health care professional’s individual statements. Statements with similar meaning were grouped together until a point was reached where further collapsing resulted in no loss of qualitatively important information. The data were classified and quantified as simple nonhierarchical typology of various for and against perceptions.

A multidimensional scaling and hierarchical cluster analysis was done with pile sort data to get collective picture of perceived rationale behind “causes” which the women and health care professionals felt went together. The analysis of free list and pile sort data was undertaken using Anthropac 4.98.1/X software [17].

2.7. Ethical Issues

This study was sponsored by the Indian Council for Medical Research (ICMR) through its Short Term Studentship (STS) program. All the participants of questionnaire survey were provided with the information and verbal consent was taken. Written consent was taken for FGD participants. The information sheet was read out to those who could not read it. None of the participants’ identities was revealed in this study report. This study has been approved by the Institutional Human Ethics Committee, All India Institute of Medical Sciences Bhopal with the Project code STS-0048-2015.

3.1. The Knowledge Attitude and Practice Survey

There were total 306 women who participated in the questionnaire door to door survey. Sixty percent of women were below forty years of age, 95% were married, 65% had education above matriculation, 40% were at least graduated, and 11% were illiterate. Table 1 shows the demographic details of the participants.

The knowledge score based on the survey questionnaire is presented in Table 2. The median score was 18 with 10 and 26 as the 25th and 75th percentile. Twenty-one percent of women were well informed with score equal to or above 29 (75%), 25% of women were adequately informed, and 54% of women were inadequately informed.

The results of the survey are shown in Tables 3 and 4. Regarding the baseline knowledge 87 percent of women reported that they have heard of cervical cancer. Fifty-six percent of women know that it is the most common cancer affecting women. Fifty percent of women thought that this cancer can affect anyone. But only 38 percent of women could identify at least one common symptom of cervical cancer. Options given were abnormal vaginal discharge, abnormal vaginal bleeding, bleeding after sexual intercourse, and bleeding after menopause. Only 24% of women could appreciate that this can be caused by sexually transmitted infections and only 40% of women knew that early age at marriage or child birth could lead to increased risk of cervical cancer. Although 47% of women were aware that cervical cancer is preventable, only 34% of women had actually heard of something called screening for cervical cancer. Only 22% of women knew any centre where cervical cancer testing could be done. Only 11 percent of women reported to have undergone cervical cancer screening. Twelve percent of women knew that a vaccine existed against cervical cancer. At the present cost 30% women agreed that they would get themselves and their family vaccinated but 45% women were not sure as to whether they will be able to get the vaccination done in the present price.

3.2. Results of the Analysis of Focused Group Discussion

There were eight separate focused group discussions of different locations, five with laywomen and three with health care professionals. There were total of 50 participants with 32 women and 18 health care professionals. Figure 1 shows the scheme of distribution of participants. There were nineteen codes generated for the baseline knowledge and perceptions regarding cervical cancer, its symptoms, and risk factors. There were 23 codes generated for the perceived reasons for low uptake of cancer screening. These codes were grouped into three themes which were (1) information gap leading to fear of unknown, (2) casual attitude, and (3) resource constrains and affordability issues each containing eight, five, and ten codes, respectively. For the perceived solutions there were 11 codes which were grouped into two groups; these were increasing awareness and vaccination with five codes each. Table 5 shows the thematic analysis of the focused group discussions and the categorization matrix.

Content Analysis of Focused Group Discussion. The following are the category, subcategory, and code wise content analysis which are numbered in the paragraph separated by dots. Same numbers could be referred to in Table 5 for better understanding.

(1.1.1) Women are of the general view that there is gross lack of awareness about cervical cancer. They perceived it to be the most common cancer among women along with breast cancer. The general perception is that women should undergo screening regularly as it is a preventable disease. If treatment is delayed the outcome is more dreaded.

(1.2.1) Regarding the causation of cervical cancer women perceived white vaginal discharge, heavy and irregular bleeding, pain, and itching in private parts to be important symptoms of cervical cancer. Interestingly women were well aware of the fact that sexually transmitted diseases involving uterus and related structures caused cervical cancer. In this effect many emphasized that use of condoms can prevent cervical cancer. Tobacco consumption is perceived as a causative factor.

(1.2.2) Author noted that women perceived abdominal mass including fibroids and ovarian cysts to be important causes of cervical cancer. Many said that decreased bleeding may lead to collection of blood inside the uterus and in turn cause cancer. Unhygienic practices like using dirty linen as sanitary pads during menstruation by young girls of poorer section can cause cervical cancer. Other misconceptions perceived by women to be a causative factor in cervical cancer were surgical abortions and prolapsed uterus and even not wearing undergarments was also thought to be a predisposing factor to infection and thus cervical cancer.

(2.1.1) It was strongly felt that there is lack of awareness about cervical cancer especially among women from rural areas. Illiteracy was the principle cause of lack of awareness and the desire to know about health related issues and opportunities. This leads to fear of cancer, fear of diagnosis, and fear of procedures or surgeries. No effort is made on the part of government to spread awareness about cervical cancer in particular. Since it is a common life-threatening disease more efforts should be made by the government in its prevention. For example, polio could be eradicated only because of widespread awareness and door to door availability of vaccination.

(2.1.2) It is perceived by the participants that women in general lack desire to give importance to personal health related issues. They take their health related issues casually and deny the fact that they can ever get the disease. They even neglect early symptoms and postpone the treatment till it is late. They find themselves busy with family chores most of the time. A lot depends on the family members like husband, mother-in-law, and father-in-law as their concurrence is desirable before any attempt is made to get medical advice.

(2.1.3) When asked to share their experiences and perceptions about health care facilities women unanimously expressed their unhappiness over the lack of facilities, staff, and infrastructure in government hospitals. Long waiting queue and lengthy procedural delays are common. Bad behavior of doctors and nurses add to the agony. Lack of punctuality is also perceived as an important reason of trouble women face in government hospitals. Some women expressed that the level of satisfaction felt after visiting a government facility is poor and also the diagnosis and treatment provided by doctors are unreliable. Although women feel satisfied after visiting private facilities they also emphasize that high cost of treatment precludes its use because most of the people in India are poor. Few women said that private hospital do hysterectomy at a trivial complaint without giving any option for cancer screening or any information about it. They felt presence of male doctors to be a cause of hesitation to visit hospital facilities particularly for examination of private parts. But once they have a problem or surgery is required they do not hesitate to visit male doctors. Some women expressed concern about nonavailability of proper transport to large government hospitals. It takes a lot of money to use private vehicles to reach there, said one woman. They suggested that they would go to camps by government doctors if held in nearby places.

(3.1.1) When asked about the most effective ways of increasing awareness about cervical cancer women expressed that they have been exposed to home to home surveys and seminars by nearby nursing college students regarding various health related issues. And they found it to be enriching and effective. Therefore, they perceived home visits and seminars by health professionals as one of the most effective methods. Moreover they also felt that unless the information is imparted by doctors or other related health professionals they ought to be trivialized and undermined. For medical students they felt the students are actually taking their help in their studies but they do not mind talking to them as women themselves also benefit from it.

(3.1.2) Television was perceived to be another important method which could increase the awareness. This is the most effective way for illiterate women who cannot read newspapers or magazines and write. Moreover television sets are available in many households even in rural areas. Short films and educational advertisements in between television serials will be very effective. It is not only informative to them but also useful for them to convince their husbands for taking up measures. Short films during interval in film theaters will be useful in educating youngsters.

(3.1.3) Information notes on newspapers, magazines, hoardings, and paper pamphlets were suggested by women to be important methods. Slogans and information printed on important documents like rail and bus tickets and so forth could be readily assessed and read.

(3.1.4) Women felt that they can gain from discussion themselves. A group of women said they gathered for yoga in a community centre where they discuss several issues including health related issues. They gain from each other’s knowledge. Women expressed that ASHA or Anganwadi workers could participate in such group discussions and increase awareness of the women of the locality. They can alleviate their anxiety about the procedures to be undertaken, cost implications, and so forth.

(3.1.5) Women expressed their unhappiness over lack of attention given to them by doctors when they visit hospitals. They considered the information imparted by the doctors during medical visits to be very useful and effective in behavior change. Women wished that the problem of crowded hospitals and insufficient staff should not come in their way in getting full attention from their doctors.

(3.2.1) The general expression of women regarding the HPV vaccine is that they “never heard about” or “they heard something but not sure what it is” when the vaccine and its efficacy are explained to them; they said they “would like to accept if made available” although they felt worried about the high cost. They expressed their concern that with the present cost the poor will never be able to get their girls vaccinated, more so if a family has more than one girl. If the cost of the vaccine is reduced they would want their daughters to be vaccinated.

Results of Free Listing and Cluster Analysis. In order to bring more objectivity and reliability the free listing exercise was done for the causes of low uptake and their perceived solutions. There were seventeen participants in the free listing exercise. Each of them enlisted a set of 2 to 6 causes which they thought were important in the decreasing order of significance. “Lack of information about cancer” and “feel shy to discuss” emerged as the most commonly perceived barriers. Others were “no attention to personal problems,” “high cost of treatment,” and “fear of cancer” in the decreasing order of importance. Table 6 shows the result of free listing exercise.

A multidimensional scaling and hierarchical cluster analysis was done with pile sort data to get collective picture of perceived rationale. There were 15 participants in the pile sorting exercise including both health care professionals and laywomen. The results of pile sorting are shown in Figure 2 and Table 7. The three groups which emerged during cluster analysis show concurrence with the findings of the thematic analysis of FGDs. These groups were thus named (1) information gap leading to fear of unknown, (2) casual attitude, and (3) resource constrains and affordability issues.

With the pile sorted data and its outcome in three major clusters or groups health care professionals and women were approached again to enlist solutions for the barriers separately for each of the three groups. Seventeen participants deliberated separately to generate separate list of solutions for each of the groups. The lists of solutions for each group thus received were free listed again for bringing objectivity and reliability. Tables 8, 9, and 10 show the results of the free listing exercise for each of the three groups of barriers. Figure 3 shows the overview of the perceived reasons and solutions for low uptake of cervical cancer screening.