UNIVERSITY OF CALGARY

UNIVERSITY OF CALGARY
Identifying Barriers to Cervical Cancer Screening in South Asian Muslim Immigrant Women
by
Syeda Kinza Rizvi
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE
DEGREE OF MASTER OF SCIENCE
GRADUATE PROGRAM IN COMMUNITY HEALTH SCIENCES
CALGARY, ALBERTA
JULY, 2016
© Syeda Kinza Rizvi 2016
Abstract
We sought to identify the barriers to cervical cancer screening among South Asian Muslim
immigrant women in Calgary. Qualitative, semi-structured in-depth interviews, by snowball
sampling, were conducted with South Asian Muslim immigrant women of Calgary who were
unscreened or infrequently screened for cervical cancer. Eighteen women were interviewed and
the majority (66%) never had a Pap test. Major findings include: misunderstanding about Pap
test reminders, strong preference for a female physician who also speaks their language, negative
experiences with healthcare providers including painful Pap test experience. Major barriers
involved: lack of knowledge about cervical cancer, fatalist beliefs, transportation, language and
unavailability of female physicians. Separate centers for Pap testing, awareness and
encouragement by healthcare providers to get tested were strategies participants suggested.
Different healthcare strategies are needed at the system and provider level to improve healthcare
experience of these women and to promote cervical cancer screening.
ii
Acknowledgements
I would like to thank my supervisor, Dr. James Dickinson for his continuous guidance,
and support. Dr. Dickinson confidence in me has made my master’s thesis achievable. I would
like to thank my thesis committee, Dr. Bejoy Thomas and Dr. Marilynne Hebert, for their
cooperation and constructive comments.
I would like to specially thank Dr. Rebecca Malhi for her time and patience throughout
this journey. Dr. Malhi was incredibly supportive and always had positive feedback and
encouraging words.
My deepest gratitude is for my parents and family (Mom, Dad, Unaiza, Ali) – for their
patience and support throughout my master’s studies. I would also like to say thank you to my
wonderful friends Y.M., Hayat Baba, Noreen Singh and Fouzia Usman for their constant
encouragement and support. Thanks to Carly for your feedback and guidance.
A big thank you to Dr. Elaine Douglas for always being a great company and taking a
keen interest in my studies. And last but not the least, thank you to my TARRANT team
(Virginia, Kim & Ian) for being supportive and allowing me to manage the time I needed to
dedicate towards my studies.
Finally, I would like to thank the eighteen women who shared their thoughts, stories, and
experiences, without your words there would have been no project.
iii
Dedication
This work is dedicated to my parents, Nasim and Zamir Rizvi- you have always provided me
with your unconditional love and support. Thank you for always believing in me.
iv
Table of Contents
Abstract ............................................................................................................................... ii
Acknowledgements ............................................................................................................ iii
Dedication .......................................................................................................................... iv
Table of Contents .................................................................................................................v
List of Tables ................................................................................................................... viii
List of Figures .................................................................................................................... ix
CHAPTER ONE: INTRODUCTION ...............................................................................1
1.1 Introduction ................................................................................................................1
Background.................................................................................................................1
Rationale of the study .................................................................................................2
1.2 Research Objective and Questions ............................................................................3
1.3 Organization and Overview of the Thesis .................................................................4
LITERATURE REVIEW ......................................................................5
2.1 Cervical Cancer and Screening ..................................................................................5
2.1.1 Guidelines for Cervical Cancer Screening ........................................................6
2.2 Cervical Cancer Screening in Immigrants .................................................................7
2.3 Cervical Cancer Screening in South Asian Immigrants ..........................................11
2.3.1 South Asian Muslim Immigrants in Canada ...................................................12
2.4 Muslim Culture, Tradition & Beliefs .......................................................................13
2.5 Cervical Cancer & Screening in Muslim Majority Countries .................................14
2.6 Barriers to Cervical Cancer Screening in Immigrants .............................................16
2.7 Barriers to Cervical Cancer Screening in South Asian Immigrants ........................17
2.8 Identified Knowledge Gaps .....................................................................................17
METHOD ........................................................................................19
3.1 Research Design ......................................................................................................19
3.2 Methods ...................................................................................................................20
3.2.1 Eligibility Criteria ............................................................................................20
3.2.2 Recruitment & Setting .....................................................................................21
Original Plan .....................................................................................................21
Recruitment Method ...........................................................................................23
3.2.3 Data Collection ................................................................................................23
3.2.3.1 Interview Guide .....................................................................................23
3.2.3.2 Interview Process ...................................................................................25
3.2.3.3 Field Notes .............................................................................................26
3.2.3.4 Data Management ..................................................................................26
3.2.4 Ethics ...............................................................................................................26
3.2.5 Data Analyses ..................................................................................................28
3.2.6 Reflexivity .......................................................................................................31
RESULTS ..........................................................................................33
v
4.1 Background ............................................................................................................33
4.2 Sample Characteristics ...........................................................................................34
4.3 Attitudes, Knowledge, Beliefs and Practices .........................................................36
4.3.1Knowledge about Cervical Cancer and Screening...........................................36
4.3.1.1 Existing Knowledge about Cervical Cancer and Screening ..............36
4.3.1.2 Knowledge Gaps about Cervical Cancer and Screening ...................37
4.3.2Preference for Physician Characteristics .........................................................40
4.3.2.1 Gender ................................................................................................40
4.3.2.2 Language and Cultural Background of Physician .............................43
4.3.2.3 Healthcare Providers’ Medical and Interpersonal Skills ...................44
4.3.3Cultural and Religious Norms .........................................................................47
4.3.4Views about Healthcare Screening (Specifically, Cancer) ..............................50
4.3.5Healthcare Seeking Practices ...........................................................................51
4.3.5.1 Emergency/Life & Death Situation ...................................................51
4.3.5.2 Preventive Measures/Screening .........................................................52
4.4 Experience with Healthcare Systems and Services ...............................................54
4.4.1Healthcare Systems in Pakistan, Bangladesh and Canada ...............................54
4.4.2General Experiences with Healthcare Providers..............................................57
4.4.2.1 Positive Experiences with Healthcare Providers ...............................58
4.4.2.2 Negative Experiences with Healthcare Providers ..............................59
4.4.3General Experiences with Healthcare System .................................................62
4.4.3.1 Positive Experiences with the Canadian Healthcare System .............62
4.4.3.2 Negative Experiences with the Canadian Healthcare System ...........63
4.4.4Pap test Experiences ........................................................................................67
4.5 Barriers to Pap Testing...........................................................................................70
4.5.1Healthcare Provider Barriers............................................................................70
4.5.1.1 Lack of Communication ....................................................................70
4.5.1.2 Painful/Uncomfortable Pap test .........................................................71
4.5.2Healthcare System Barriers..............................................................................71
4.5.2.1 Preference & Unavailability of Female Physicians ...........................71
4.5.3Personal Barriers ..............................................................................................72
4.5.3.1 Invasion of Privacy/Shyness ..............................................................72
4.5.3.2 Lack of Awareness and Significance of Pap test ...............................73
4.5.3.3 Fatalistic Beliefs.................................................................................75
4.5.3.4 Prioritizing Family Members over Themselves .................................76
4.5.3.5 Role of Husband & In-laws ...............................................................77
4.5.3.6 Language Issues .................................................................................78
4.5.3.7 Sexual Partner ....................................................................................79
4.5.4No Barriers .......................................................................................................79
4.6 Strategies for Encouraging Pap Testing .................................................................80
4.6.1Healthcare Provider Strategies .........................................................................80
4.6.2Healthcare System Strategies ...........................................................................81
4.6.2.1 Female and Same Language Physicians ............................................82
4.6.2.2 Women-only centres for conducting Pap test/physical exams ..........84
vi
4.6.2.3 Education and Knowledge of Healthcare System: Cervical Cancer and
Screening .................................................................................................85
4.6.2.4 Services and Resources ......................................................................89
4.7 Summary Tables ....................................................................................................92
DISCUSSION AND CONCLUSION .................................................96
5.1 Introduction ............................................................................................................96
5.2.1Lack of Knowledge ..........................................................................................98
5.2.2Personal Views and Beliefs ...........................................................................100
5.2.3Cultural and Religious Norms .......................................................................101
5.2.4Healthcare Seeking Practices .........................................................................103
5.2.5Experience with the Healthcare System and Services ...................................105
5.2 Barriers to cervical cancer screening faced by South Asian Muslim immigrants and
strategies suggested by participants to encourage screening ...............................107
5.2.1Healthcare Provider Barriers..........................................................................107
Lack of Communication by Physicians ...........................................................107
Painful/Uncomfortable Pap tests .....................................................................108
5.2.2Healthcare System Barriers............................................................................109
Unavailability of a Female Physician ..............................................................109
First Language Physician .................................................................................110
5.2.3Personal Barriers ............................................................................................111
Views and Beliefs ............................................................................................111
Lack of Awareness...........................................................................................111
Role of Family .................................................................................................112
Language Issue ................................................................................................112
5.3 Strategies suggested by the participants to overcome barriers to cervical cancer
screening ..............................................................................................................113
Healthcare Provider Strategies ...............................................................................114
Healthcare System Strategies .................................................................................114
5.4 Limitations of the study .......................................................................................115
5.5 Conclusion ...........................................................................................................115
BIBLIOGRAPHY ............................................................................................................119
APPENDIX A- LETTER OF SUPPORT FROM HUSSAINI ASSOCIATION ............125
APPENDIX B- RESEARCH PROTOCOL .....................................................................126
APPENDIX C- INTERVIEW GUIDE ............................................................................128
APPENDIX D-CONSENT FORM ..................................................................................130
APPENDIX E-CODING STRUCTURE .........................................................................133
vii
List of Tables
Table 3.1: Table of mosques in Calgary with Islamic sect, ethnicity of individuals attending
& services offered ................................................................................................................. 22
Table 3.2 Interview guide questions (open-ended) by subject ..................................................... 24
Table 4.1: Four Major Themes & Sub-Themes ............................................................................ 33
Table 4.2: Sample Characteristics................................................................................................. 35
Table 4.2: Summary of the Major Findings .................................................................................. 93
Table 4.3: Similar findings across different themes ..................................................................... 95
Table 5.1: Strategies suggested by the participants and the barriers they would overcome ....... 114
viii
List of Figures
Figure 2.1: Age-Standardized Prevalence for Cervical Cancer Screening Among Female
Alberta Immigrants, combined by Years (2005 to 2010) since Immigration. ........................ 9
Figure 2.2: Cervical Cancer: Age-Specific Incidence per 100,000 Population; Immigrant and
Non-Immigrant Women in Alberta (1994 to 2012 combined). ............................................ 10
Figure 3.1: Braun & Clarke (2013) Thematic Analysis ................................................................ 30
Figure 5.1 Factors influencing South Asian Muslim immigrant women’s views and practices
towards cervical cancer and screening .................................................................................. 98
ix
Chapter One: Introduction
1.1 Introduction
Background
Cervical screening, also known as Papanicolaou test (Pap test), is very effective for those
who participate, yet screening participation rates are lower in certain populations, such as
immigrants, refuges and aboriginals (1). Recent immigrants (those living in Canada for 10 years
or less) are half as likely to be screened compared to Canadian-born and long-term residents in
Canada (2). This behaviour may be influenced by religious or cultural beliefs. Immigrants can
have different knowledge of disease and prevention, perspectives and expectations and may be
accustomed to different practices than those followed in Canada. Attention must, therefore, be
paid to these populations regarding healthcare education and provision.
Islam is the second most frequent religion in Canada; more than a million immigrants
identified themselves as Muslim in 2011 (3). There is continued influx of Muslims immigrating
to Canada, and with the lower likelihood of new immigrants being screened for cervical cancer,
this sub-population warrants increased attention. Low screening rates are due to multiple
barriers, such as the availability of a female physician, lack of knowledge and cultural
differences (4-6). Understanding the beliefs, awareness, requirements, comfort and knowledge of
Muslim women regarding screening, will assist us to better identify the barriers to cervical
cancer screening and how to overcome them.
1
Rationale of the study
Worldwide, cervical cancer is the second most common cancer in women, and the seventh
overall, with an estimated 528,000 new cases recognized in 2012 (7). The majority of cases
(~85%) occur in less developed countries, where cervical cancer accounts for 12% of all
women’s cancers (7). In Canada, before screening, the lifetime incidence rate for cervical cancer
was around 2%, and half of the women diagnosed with this disease did not survive (8). Since
widespread screening has become the norm in Canada and early treatment has increased, most
cases of invasive cervical cancer that occur today are due to never having a Pap test, or having a
long interval between tests (9).
Immigrants are less likely to practice cervical cancer screening (2, 6). In particular, South
Asian immigrants have lower screening rates compared to other immigrants (4, 6); only 32.8%
reported having a Pap test in a South Asian community-based study conducted in United States
in 2012 (6). The current literature on cervical screening disparities emphasizes the influence of
socioeconomic factors, ethnic affiliation and immigrant status on Pap testing patterns, but
overlooks the influence of religion.
Very limited research has been conducted on the Muslim population in Canada. The
population of Muslims in Canada has dramatically increased over the last 20 years; by 2030, it is
expected that Muslims will comprise 6.6% (2,661,000) of the total Canadian population (10).
While Muslims are ethnically and racially diverse, all Muslim women are likely to share key
principles, values and beliefs, based upon the religion of Islam. This study focused on female
South Asian Muslim immigrants to better understand their perspective and traditions and their
cultural and religious beliefs that can influence cervical cancer screening practices.
2
1.2 Research Objective and Questions
The research objective of this study was to explore perceptions of, and barriers faced by,
South Asian Muslim women residing in Calgary, Canada, with regard to cervical cancer
screening. The women in this study were also asked their opinion on ways to encourage cervical
screening in their community. The specific focus was to gather information from this subpopulation on the following aspects:
i.
Knowledge, perspectives and healthcare-seeking practices pertaining to cervical cancer
and screening;
ii.
Experiences with healthcare systems and providers;
iii.
Barriers to cervical cancer screening; and
iv.
Strategies to overcome barriers to cervical cancer screening.
From these objectives, the following research questions were formulated:
1. What factors influence South Asian Muslim immigrant women’s views on, and practices
towards, cervical cancer and screening?
2. What are the barriers to cervical screening faced by South Asian Muslim immigrants and,
in response to these, what strategies were suggested by participants to encourage
screening within this community?
3
1.3 Organization and Overview of the Thesis
Each chapter of the thesis serves to explain a part of the research study from its beginning
to conclusion. A review of relevant literature of immigrant women and cervical cancer screening
is presented in Chapter 2, along with the rationale of this research, by way of identifying gaps in
current literature.
The research design and methods are then outlined in Chapter 3, including the procedure
used for data collection and analysis, namely surveys/interviews and interpretation of the
findings from these. Ethical considerations are mentioned, with a reflexive account of the
researcher, reporting and representing the voices of South Asian Muslim immigrant women who
participated in this project.
Chapter 4 presents the findings of the study framed by the different themes, based on the
two research questions. Quotations taken from the surveys/interviews were used to illustrate the
participants’ points of view.
Chapter 5 discusses the results of the study and links these with current literature that
supports or contradicts the information gathered. The limitations of the study, and some ideas for
future research, are also presented in this chapter. Finally, Chapter 5 concludes the project,
linking key findings and earlier chapters to the research questions and objectives.
Recommendations to improve access and to encourage cervical screening among South Asian
Muslim community, and for immigrants in general, are also presented.
4
Literature Review
This chapter is a literature review that addresses various topics pertinent to cervical cancer
screening among South Asian Muslim immigrants. These topics include: cervical cancer, the
importance and guidelines for cervical screening in Canada, cervical screening practices among
immigrants in general and from South Asia. Screening practices of South Asian Muslim
immigrants and Muslims in general will also be presented. The chapter concludes with barriers
to cervical screening among immigrant and South Asian immigrants and current knowledge gaps
in the literature.
2.1 Cervical Cancer and Screening
It is estimated that each year 1,300 women are diagnosed with cervical cancer in Canada,
with the case fatality rate being higher than 25% (11). Almost every case of cervical cancer is
due to infection by strains of high-risk types of human papillomavirus (HPV), with over 70% of
cases caused by HPV types 16 and 18 (11). In 2004, the age-standardized mortality rate for
Alberta was 1.6 per 100,000. This is lower than the overall Canadian rate of 2.0, while Manitoba
and Quebec had the lowest rate of 1.5 per 100,000 (12).
Years of life lost is a measurement of the burden of disease, estimated by subtracting the
age at death due to cancer, from the average life expectancy. On average, 25.9 years of life are
lost per person affected with cervical cancer, which is a higher burden of disease than breast
cancer, due to which 19.3 years are lost/person (13). Women with cervical cancer, or survivors
of this disease, are, themselves affected, but so too are their family and friends. This is by
reduced quality of life from long term effects of treatments, which influence the sexual and
reproductive systems (14, 15).
5
In 1920s, the Papanicolaou (Pap) test was developed. It is now the commonly-used test for
cervical cancer screening. The Pap test procedure involves collecting a small sample of cells
from the outer cervix, with a small spatula or brush. The sample is stained and examined under a
microscope, to detect the presence of abnormal cells that could be signs of cervical cancer, or
precursor lesions of the disease (16).
Regular Pap testing can prevent 90% of cervical cancers. On average, cervical cancer can
take two to three decades to develop, which makes preventive screening possible by detecting
any precancerous lesions prior to the development of the invasive disease (17). While screening
for cervical cancer reduces incidence of and mortality from cervical cancer (18), systematic
screening in different countries varies widely (19). In Canada, cervical cancer largely affects
women who are not screened, as they are three times more likely than those who are screened, to
be diagnosed late in the progression of the disease, with an invasive cervical carcinoma (9, 20,
21)
With an efficient screening process that can detect early alterations, cervical cancer can
be successfully treated and prevented. Thus, measures should be taken to promote cervical
screening in Canada. With the diverse ethnic population in Canada and continued immigration, it
is essential to give attention to the promotion and practice of cervical cancer screening of
immigrants.
2.1.1 Guidelines for Cervical Cancer Screening
Guidelines of when and how often Pap tests should be conducted vary between provinces
in Canada. According to the Canadian Task Force on Preventive Health Care (CTFPHC), routine
Pap testing is not recommended for women who are younger than 25 years, while an interval of
6
every three years is recommended for women between the ages of 25 to 69. Screening is no
longer needed over the age of 70, if the results of the last three consecutive Pap tests conducted
over the last 10 years were negative (17). However, the Public Health Agency of Canada
recommends Pap testing for sexually active women every one to three years according to
provincial guidelines (16).
In Alberta, during this research, regular Pap testing (also called Pap smears) was
recommended for women who have ever been sexually active between the ages of 21 and 69
(16). After the first Pap test, annual Pap tests should be conducted, consecutively, for three years.
If all three of these tests are normal, then subsequent Pap tests should be performed once every
three years. Continued annual Pap tests would be of little benefit, as the progression of the
disease is so slow; they would not provide information of any more significance than those
conducted every three years. Over-screening can result in over-diagnosis of changes in the
cervix, requiring unnecessary follow-up testing. Women over the age of 69 do not require
cervical cancer screening if, within the past 10 years the last three Pap test were normal, and no
serious abnormal changes were detected in earlier tests (17).
2.2 Cervical Cancer Screening in Immigrants
Canada’s immigrant population is steadily increasing and in 2011, the foreign-born
population in Canada was approximately 6,775,800. This represented 20.6% of the total
population, the highest proportion ranking among the G8 countries (3). A meta-analysis of
studies measuring immigrants’ screening practices found that 53.8% of women diagnosed with
invasive cervical cancer had not adequately participated in prior screening and of these, 41.5%
were never screened (22). In Ontario, 17% of the women in the Canadian Community Health
7
Survey (CCHS) reported not having a Pap test on time (n=13.549); this was strongly associated
with being a recent immigrant (OR=1.81, 95% CI: 1.24, 2.63) (23).
Several studies conducted worldwide indicated that immigrants are less likely to have
been screened for cervical cancer than non-immigrants (2, 4, 6, 24-31). In the USA, Latin
American and Asian immigrant women are less likely have ever been screened than native-born
women (24, 28). Similarly, in Canada, foreign-born women have high mortality rate from
cervical cancer (28) and are less likely to get screened than Canadian-born (2, 4, 6, 25-27, 2931).
According to the Health Trends Alberta report (32), released in September 2012, a lower
proportion of the immigrant women get screened for cervical cancer in Alberta compared to nonimmigrant women, as shown in Figure 1.
8
Immigrants
Figure 2.1: Age-Standardized Prevalence for Cervical Cancer Screening Among Female
Alberta Immigrants, combined by Years (2005 to 2010) since Immigration.
Although immigrant women are more likely to be screened for cervical cancer, as their
length of stay in Alberta increases, their rate is still lower compared to non-immigrant women,
even after long-term residence (32). As cervical cancer is preventable with regular screening and
immigrant women are less likely to participate in the process, regardless of the duration in
Canada, the incidence of cervical cancer is higher in older immigrant women (33), as shown in
Figure 2.
9
Figure 2.2: Cervical Cancer: Age-Specific Incidence per 100,000 Population; Immigrant
and Non-Immigrant Women in Alberta (1994 to 2012 combined).
Immigrant women over the age 45 years have a higher incidence of cervical cancer,
compared to that of non-immigrant women, and vice versa before the age of 45 years (33),
regardless of the age when these women immigrated. The higher incidence among immigrant
women over the age of 45 may be due to late diagnosis, as it can take decades for cervical cancer
to develop.
Similarly, in Ontario, newly immigrated women (who have been resident in Canada for
less than 10 years), are half as likely to receive cervical cancer screening, in comparison to
Canadian-born women (2). Women who immigrated to Canada 10 years ago or longer, still had
lower cervical cancer screening rates than Canadian-born woman. Other factors, such as higher
level of education, younger age and being married, were separately associated with higher Pap
10
testing among all the participants (2).
Thus, as Canada continues to expand due to immigration, and as research shows lower
cervical cancer screening practice in immigrants, action is called for to increase screening in
immigrant women.
2.3 Cervical Cancer Screening in South Asian Immigrants
Many studies have examined cervical cancer screening among different ethnic groups,
such as Chinese, Vietnamese, Korean, Hispanic and Filipino, in US, UK and Canada (34-39).
However, very limited research has been conducted on cervical cancer screening practices
among South Asian immigrants. Studies looking at immigrant ethnicity and cervical cancer
screening found that of all the immigrants, those from South Asia had the lowest screening rates
in Canada and United States (4, 6, 23, 26, 29, 31, 40). Only 32.8% of the women in a South
Asian community-based study, conducted in Chicago reported having a Pap test (6). Lower Pap
testing occurrence rates were also reported by South Asian women of high socioeconomic status,
in a survey in Connecticut (40).
A survey of South Asians conducted in Toronto, showed that three quarters of all
participants, and half of the sexually active women, never had a Pap test (31). Using geographic
methods, the pattern of screening rates among the immigrant population from South Asia living
in Ontario, was analyzed (41). The resulting maps supported previous literature concerning
South Asians being vulnerable to under-screening for breast, cervical and colorectal cancer (4, 6,
13). Moreover, South Asians are more likely to reside in places with lower rates of breast,
cervical and colorectal cancer screening (41). In British Columbia South Asians were also found
to have a lower survival rate for cervical cancer, as compared to the Chinese and general
11
population (42). The lower survival rates in South Asian population, despite overall improved
survival rates from cervical cancer in Canada, can be attributed to insufficient screening practices
and therefore missing the opportunity for early detection.
The South Asian immigrants identified with the lowest screening rates are from Pakistan,
India, Bangladesh and Sri Lanka (4). It is important to note that these are developing countries,
and drastic differences can exist within populations of the same country, due to various social,
economic and political factors, as well as disparity in access to education and health care.
Cervical cancer screening practice may be influenced by religious or cultural beliefs; religion is
the second common factor within the identified countries (except for Sri Lanka).
2.3.1 South Asian Muslim Immigrants in Canada
Pakistan and Bangladesh are predominantly Muslim countries and, while Islam is not
practiced by the majority in the country, the number of Muslims in India is very high, due to
population size. India, Pakistan and Bangladesh are among the 10 countries in the world with the
largest Muslim population (10). About 70% of the Sri Lankan population follows Buddhism,
Hinduism and Christianity accounts for 14% and 7% respectively of the population, and Muslims
comprise only 10% (10). Due to the small number of Muslims in Sri Lanka, it is challenging to
find Muslim immigrants in Calgary from that region.
According to the National Household Survey (NHS) in 2011, more than 1 million
individuals identified themselves as Muslims, representing 3.2% of Canada’s total population,
with 56,785 Muslims (29,225 males 27,560 females) living in Calgary (3). As these numbers
were generated through self-reporting, they are likely to be an underestimate, with people either
not identifying themselves as Muslims or not participating in the survey. Additionally, Asia
12
(including the Middle East) was the largest source of immigrants into Canada from 2006 to 2011,
and South Asians were among the three largest visible minority groups of Canada in 2011 (3).
Therefore, with continued influx of immigrants from South Asia, and large Muslim populations
within the countries whose immigrants practice low cervical cancer screening, it is important to
focus on the South Asian Muslim community. Furthermore, doing so may produce information
relevant to other immigrant communities.
2.4 Muslim Culture, Tradition & Beliefs
Regardless of the community, Muslims have unique cultural and religious beliefs that can
affect their behavior towards healthcare utilization. Common cultural practices of Muslims
include high value placed on modesty, which is manifested in their appearance, behavior and
social interactions. For example, any physical contact with a male (i.e. hand shaking) may be
unacceptable for some Muslim women. In many traditions their background discourages display
of any physical beauty, to prevent attention from male strangers. The practice and expectation for
Muslim women to cover most of the body can become a barrier in a healthcare setting, which can
result in reluctance, or requiring more time, to remove clothing for an examination. Muslim
women prefer a female physician (43-45), and may refuse to be seen by a male physician without
a chaperone, which can further impede healthcare utilization (44).
The majority of Muslim women do not utilize prevention, or follow health
recommendations on regular basis until after marriage or during pregnancy and seek medical
care for only serious health issues (45). Married or pregnant Muslim women may accept invasive
examinations when it is mandatory for treatment, however cervical cancer screening that is
aimed at disease prevention, may be deemed unnecessary. Additionally, lacking knowledge
13
about risk and risk factors of cervical cancer, alongside concerns of losing privacy and modesty
(i.e. by disrobing), could cause reluctance to consent to cervical cancer screening by Muslim
females (45). The unique characteristics of Muslims that are, perhaps more complex and
different from other communities, require further detailed exploration to ascertain the extent of
barriers in this group.
2.5 Cervical Cancer & Screening in Muslim Majority Countries
There is limited research on Canadian Muslims, in particular, regarding their screening
attitudes and practices. Women in predominantly Muslim countries report under-screening for
Pap testing and lack of knowledge concerning the procedure and its importance and objective.
A survey in Pakistan (n=192) found that, overall, only 36% of the participants have ever
heard about cervical cancer, 5% were aware that screening was available for cervical cancer, and
only 2.6% had ever had a Pap test. Lack of information about cervical screening was the most
common reason for not getting Pap tested (46). Although the prevalence of abnormal Pap smears
was found to be lower in Pakistan compared to Western countries, mortality caused by cervical
cancer is high here. The high mortality can be attributed to absence or delay in cervical cancer
screening that leads to patients presenting with late stages of cervical cancer (46). In Pakistan, a
retrospective study with cervical cancer patients (n=490) found that the majority of patients
(67%) presented at stage II to IV of the disease, and only 12% at stage 0 or I (47). Similarly, in
Libya, 65% of cervical cancer patients were diagnosed at stages III and IV (48).
In Yazd City of Iran, an analysis of the health records of 441 women, from 2011-2012,
showed only 49% of the participants have ever had a Pap test (49). Another study in Iran,
looking at 100 cervical cancer cases, found only 2% of the participants had a Pap test before
14
diagnosis of the disease (50). Being unaware of the importance of Pap tests was the main reason
that women had no cervical screening history (49). In Lebanon, a survey of 290 women revealed
a lack of knowledge and low rates of Pap testing in one third of the participants (51). In Qatar,
interviews with 500 women showed that approximately 40% of the women reported having had a
Pap test at least once, and 85.5% were willing to get Pap tested, if the procedure was not painful
(52). In Jeddah (Saudi Arabia), a self-administered questionnaire completed by 500 randomly
selected women revealed that only 14% (n=72) of the participants were aware of human
papilloma virus (HPV) as an etiological agent for cervical cancer. Although 68% (n=338) of the
respondents had knowledge of Pap testing, only 17% had been Pap tested. Lack of awareness
about Pap testing was the most common reason for not practicing cervical screening (53).
In Turkey, a cross-sectional study of 240 women showed that 79% of the women did not
know what a Pap test was, and 73% had never been tested (54). In another study (n=397) found
24.7% of Turkish women had knowledge about the Pap test and 11.8% of them had undergone at
least one Pap test (55).
The cross-sectional survey conducted in five rural districts with 959 Malaysian women
found only 49% had had a Pap test in last three years (56) and only 38% (total n=403) had ever
had a Pap test (57).
Overall, research in the Muslim-majority countries described above, demonstrated
women with poor knowledge about cervical cancer and low Pap testing rates. Consequently,
women were diagnosed with cervical cancer in the later stages of the disease. Muslim women
may continue to remain unscreened after immigrating to Canada, due to lack of education
regarding this disease and facilities in their country of origin.
15
2.6 Barriers to Cervical Cancer Screening in Immigrants
Since immigrants are less likely to practice screening, we need to understand the barriers
which impede screening in Canada. Some of the personal characteristics related to screening
behaviour that prevent immigrants from getting regularly screened are marital status,
acculturation, being a visible minority and immigrant, lower education, income and not having
English or French as their first language (6, 23, 26, 31, 35, 40, 58) . These characteristics are
related to cervical screening behaviour but do not themselves prevent women getting screened.
Other factors that do prevent women from cervical screening are knowledge and beliefs about
cervical cancer screening (taught to them in their native Asian country), fear of Pap smears
threatening one's virginity and pain (23, 31, 45, 52, 54, 59, 60).
Healthcare system and provider barriers to cervical cancer screening for immigrants
include: primary care provider characteristics, and unavailability of a health care provider, in
particular a female physician from the same region (43, 45). Unavailability of a female physician
was found to be a strong contributing factor for non-screening and had the highest populationattributable risk in Ontario (4). In Canada, the most common reason reported for not participating
in time-appropriate Pap testing was that women themselves, or their physicians, did not consider
cervical screening necessary (23).
Groups who are more likely to partake in cervical cancer screening include women who:
are between the ages of 40 and 49 years old; are married with children; have received
encouragement from their husbands; have higher education (55, 56, 61); have past screening
behavior; and have a history of cancer in the family (55)
16
2.7 Barriers to Cervical Cancer Screening in South Asian Immigrants
In addition to the barriers that apply to immigrants in general, a few studies have reported
barriers specific to the South Asian population (6, 23, 31, 40, 41, 62). Lack of knowledge was
found to be a major obstacle, as only 36.5% of all surveyed women (n=124) were able to identify
Pap testing as a screening tool for cervical cancer (31). Other factors included low formal
education and/or education taking place outside of Canada and acculturation (6, 23, 31, 40). No
research on barriers towards cervical cancer screening among the South Asian population
specific to Muslims was found.
In the United States, South Asian immigrants had higher odds of getting Pap tested if
they were married, had higher education, higher income, undergone acculturation, and healthcare
insurance (24, 63). A supportive educational intervention with Muslim Middle Eastern women
revealed that the experimental group (those with support) was more disposed to get Pap tested
compared to the control group (those without support). Women who perceived a higher level of
social support were more likely to be willing to get Pap tested (64).
2.8 Identified Knowledge Gaps
The following are the gaps identified in the literature, relating to incidence of Pap testing and
cervical cancer in South Asian immigrants.
§
Although previous studies have looked into immigrants, in particular South Asians, the
representative of Muslims in the study sample is questionable. There are either few
reports or the specific barriers pertaining to this group were not completely captured.
§
Perspective of immigrants, in particular of South Asians, towards cervical cancer
screening is not well established. We know that these women do not get screened (what
17
the problem is) but not the reasons behind it (why there is a problem).
§
No qualitative research was available, involving [one-on-one] interview-based studies
with South Asian-Muslim immigrants, to understand possible barriers to cervical cancer
screening.
Conclusion
Cervical cancer is preventable, with early detection and treatment. The South Asian
Muslim Immigrant population is increasing in Canada, and it is crucial to understand barriers
faced by this community in order to increase the rate of screening for cervical cancer and,
therefore, reduce the rate of mortality from this disease as a consequence. Therefore, this study
will identify barriers to ever having a Pap test, which are particularly important to understand
possible factors that hinder initiation of cervical cancer screening behavior. By understanding
and implementing measures to overcome the factors identified, it is hoped that screening
behavior will be improved.
18
Method
This chapter presents the research design and methods used to conduct this study.
3.1 Research Design
A descriptive, qualitative study was conducted with South Asian Muslim immigrant
women in Calgary to provide a deeper understanding of their perspectives regarding cervical
cancer screening and the barriers they face. Qualitative analysis of participant data was
conducted as this approach is ideal for research questions that require understanding of the
participants’ views (65).
As the research objective involves knowing perspectives and identifying barriers to
cervical screening, semi-structured interviews were used for data collection. Focus groups were
considered but deemed not to be suitable as conversations regarding cervical cancer and
screening, especially among Muslim communities can be culturally inappropriate, and
considered a private matter that is not commonly discussed even among family members. Focus
groups provide some degree of privacy for the participants, but the convention of discussing
openly and relying on the group to maintain privacy is not easily accepted within this
community. Consequently, women from this culture are likely to be more comfortable talking
individually rather than in a group, so data were collected through in-depth, one-on-one
interviews.
The goal of these interviews was to obtain detailed responses that would provide a more
accurate understanding of the meaning an individual attaches to an event and to understand the
complexities of their attitudes, behaviours and experiences. “Guided conversations” in a relaxed
research environment are important for eliciting detailed responses about sensitive information
(66) and provided participants with an opportunity to clarify responses.
19
The interview approach used in this study was based on an interview guide carefully
worded in culturally appropriate lay language for the subject matter of the research. Questions
were arranged in logical sequence, and depending on their fluency in English, participants were
asked and allowed to answer in Urdu.
3.2 Methods
3.2.1 Eligibility Criteria
A sample of South Asian Muslim immigrant women was needed and the following inclusion
criteria were used for participation in the study:
1) Be a female Muslim (level of religious practice or parents’ religion not relevant)
2) Be a South Asian immigrant from India, Pakistan and Bangladesh (no restrictions regarding
the length of residence in Canada)
3) Be 25 years of age or older (in Canada, cervical screening is recommended for sexually active
women between the ages of 25 and 69)
4) Be proficient in English, Hindi, Sindhi, Punjabi or Urdu (languages that the researcher can
fluently speak)
5) Be able to read the English consent form
6) Either have not had a Pap test or only 1-2 Pap tests in the last ten years (any country)
There were no educational or occupational criteria. The broad eligibility criteria were
planned to enable a wide range of South Asian Muslim immigrant women to be included in the
study to capture various perspectives from different backgrounds.
20
3.2.2 Recruitment & Setting
Original Plan
The goal was to obtain a study sample of South Asian immigrants from India, Pakistan
and Bangladesh of varying ages and with varying lengths of residency in Canada. For a broad
representation of South Asian Muslim women, the study was initially planned to recruit from
mosques in Calgary that had a predominantly Indian/Pakistani membership. All the Islamic
mosques in Calgary were considered (67) : they are described in table 3.1.
The Ahmadiyya Muslim community and their mosque, Baitun Nur Mosque, the largest
mosque in Canada, was not included in the study. Despite the high number of members with
Indian and Pakistani origin, this community is a minority Muslim group that make up less than
one per cent of the world’s Muslims (about 2.5 per cent of those in Canada). Further, they are
generally highly educated and well assimilated to Canada, so it was expected they would not be
informative to our research question. Hence, only Shia and Sunni sects were considered, as they
are the most common sects among South Asian countries.
Taravista Mussallah (Sunni) and the Hussaini Association of Calgary (Shia) are the only
mosques of predominantly Pakistani/Indian origin in Calgary. According to mosque
management, in 2014 approximately 4,000 Shia reside in Calgary, out of which 800 are
registered members at the Hussaini Association of Calgary (67).
The Taravista Mussallah mosque does not provide separate accommodation for women to
pray (67). As a result, women do not attend this mosque, so the study could not be conducted
there. There are seven other Sunni mosques in Calgary, which due to the ethnic diversity of their
membership, use only English as the language of service. Thus, South Asian immigrants who are
new to Canada, have low education levels or limited English language skills, do not attend these
21
places. Given the challenges of finding mosques that host Sunni South Asian women, we limited
recruitment to the Shia mosque (Hussaini Association of Calgary) only. Even though the mosque
president was supportive and provided a letter of support (Appendix I), recruitment at this
mosque proved difficult. The researcher approached many women in the mosque for
participation in the study but could not recruit any participants. Women did not feel comfortable
participating in a study that involved talking about parts of their bodies deemed private,
especially in front of other females. Timing was also an issue, as the majority of mosque
programs were held weekday evenings and people left right after the event.
Table 3.1: Table of mosques in Calgary with Islamic sect, ethnicity of individuals attending
& services offered
Name of Mosque
Downtown Masjid
8th & 8th Musalla
Akram Jomaa
NW Mussallah
Sect
Sunni
Sunni
Sunni
Sunni
Taravista Mussallah
Sunni
Hussaini Association of
Calgary
Alkawthar Community
Centre of Calgary
Al-Madinah Calgary Islamic
Centre
Shia,
Jafari
Shia,
Jafari
Islamic Information Society
of Calgary
South Musallah
Calgary Markaz
Musallah Al Huda
Al-Makkah Calgary Islamic
Centre
Downtown Mussalla (Main)
Al Falah Musallah
Calgary South West Masjid
Ethnicity(s)
Multicultural
Multicultural
Predominantly Arab
Unknown
Predominantly
Indian/Pakistani
Predominantly
Indian/Pakistani
Services Offered
Jumaa prayer only
All prayers including jumaa
Room open for individual prayer
All prayers including jumaa
Predominantly Arab
Room open for individual prayer
Sufi
Predominantly
Indian/Pakistani
All prayers including jumaa
Sunni
Multicultural
Sunni
Shia,
Bohra
Ismaili
Sunni
Multicultural
All prayers including formal
jumaa (halaqas in Somali
language)
Room open for individual pray
Unknown
Not Available
Multicultural
All prayers including jumaa
Sufi
Multicultural
Jumaa prayer only
Sunni
Sunni
Sunni
Multicultural
Multicultural
Predominantly Arab
All prayers including jumaa
All prayers including jumaa
All prayers including jumaa
**Jumaa means Friday prayer
22
All prayers except formal jumaa
All prayers including jumaa
Recruitment Method
No interested participants were identified through the formal approach. The researcher
asked in the community and one woman finally agreed to be interviewed at a restaurant near her
workplace, and suggested other women who could be eligible and interested in participating. The
remaining participants (both Shia or Sunni) were recruited using the snowball method: taking
referrals for potential participants from individuals already interviewed. As word of mouth
spread, further study participants were easily recruited by this method. After being informed by a
current interviewee, the researcher contacted the potential participant, and women who fulfilled
the eligibility criteria were included. Participants were informed about the study through a
protocol (Appendix II) that indicated the purpose, eligibility criteria and impact of the research
study. For convenience and more flexible scheduling, interviews were conducted at participants’
homes, restaurants, and at the University of Calgary (The Taylor Family Digital Library).
3.2.3 Data Collection
3.2.3.1 Interview Guide
The interviews were conducted using an interview guide that included a demographic
section, then open-ended questions, and follow-up queries if needed (Appendix III). The
demographic questions asked participants their age, education level, and marital status etc. The
main series of questions (Table 3.2) explored their healthcare practices, experiences with the
healthcare system and provider, the barriers to screening and strategies to overcome them. At the
end of the interview, participants were asked if they would like to say anything else, in general,
or in response to the previous questions.
23
Table 3.2 Interview guide questions (open-ended) by subject
Subject
Healthcare
Utilization
Knowledge
about Cervical
Cancer
Knowledge
about Cervical
Cancer
Screening
Barriers to
Cervical
Cancer
Screening
Barriers to
overcome
Cervical
Cancer
Screening
Questions
Could you please tell me your views about the Canadian healthcare system and
physicians?
a) Where do you go for treatment mostly? How would you describe the service
provided there?
b) Where do the males in your family go?
c) What are the most important things you desire in the physician?
d) If you are in a life and death situation and there is no physician available that
meets up your most important trait you said before, will you get treated or leave
and why?
ii. Who else will be involved in this decision?
ii) Will you like to share some of your or someone you know who
experienced being unable to find a desired physician?
Could you please tell me anything that you know about cervical cancer?
a) What do you know about cervical cancer?
b) Who is mostly affected by cervical cancer?
c) Is it preventable?
a) What are your views about cancer testing (screening)?
b) Were you ever asked about Pap testing by your physician?
i. How did they describe it to you?
ii. If you said no, did your physician explain its reason/importance?
c) If you were tested, when was the last time you got tested?
i. Why didn’t you do it again?
d) How often do think/know you should be tested for cervical cancer screening?
e) When you think women should not get Pap testing or do not need it?
Could you please tell us problems that immigrants face with cervical cancer
screening?
a) What are the problems to cervical cancer screening in Muslim immigrants?
b) Were these or other barriers present in country where you came from?
b) What are the barriers that stops you from Pap testing (if more than one ask
following)
i. Which is the biggest barrier
ii. Were these or other barriers present in country where you came from?
What actions you think should be taken to make cervical cancer screening easier
for Immigrants?
a) How should we encourage Muslim immigrants to get cervical cancer
screening?
b) Have you seen or heard any actions to increase cervical cancer screening?
24
3.2.3.2 Interview Process
A total of eighteen women (16 Pakistani, 2 Bangladeshi) were interviewed from May to
July in 2015. The place and time of the interview were organised in advance, and the interviewer
reminded the participant of the appointment a day before the meeting. The interviews were not
conducted in the mosque due to the cultural and religious barriers described earlier.
A cultural and religious custom is to offer food and/or drinks to the guest. Thus, every
time an interview was conducted, a snack and/or tea was served to the interviewee beforehand.
This also helped facilitate the conversation and build a more relaxed and casual environment
where participants could feel free to share their own beliefs and perspectives.
After the initial introduction by the interviewer, a casual conversation was conducted
with the participants. The conversation was geared towards getting to know them better, for
example by asking about their children, Pakistani background and leisure activities. This preinterview conversation was conducted in Urdu to help the women feel comfortable, as well as to
build trust and confidence. Participants completed the consent form for the study and then the
researcher conducted in-depth, semi-structured interviews using an interview guide (Appendix
III). If the participant had problems communicating in English, the researcher translated phrases
and/or questions to Urdu. Participants were also encouraged to respond in Urdu when they
seemed uncomfortable or were unsure how to express their ideas in English. The interviews were
audio recorded, and two battery-operated voice recorders were used in case one malfunctioned.
Some participants were able to clearly communicate the barriers they faced and advocate
for their needs; others were hesitant due to English language fluency and shyness. They often
spoke in broken phases or incomplete sentences or misunderstood the questions. In these
25
instances, the questions were reworded (i.e. doctor instead of physician), repeated several times
or asked in their own language.
3.2.3.3 Field Notes
Field notes were taken during and right after the interviews in order to capture the
interview environment (e.g. location, room set and disruptions), non-verbal communication and
any thoughts/ideas that came to the researcher during data collection. In addition, analytic notes
were written while listening to and coding the interviews. They were intended to capture
interesting points, contradictions, thoughts and reflections to illustrate how the researcher
interpreted the data and reached conclusion.
3.2.3.4 Data Management
All the interviews were translated and transcribed in English in order to capture all
information shared by the participants. Shiyara Ranasinghe, who had previously transcribed for
various projects at the University of Calgary, performed a verbatim transcription of the audiorecorded interviews. Transcripts containing Urdu were translated by MCIS language services, a
non-profit organization. A colleague (Samreen Khan), fluent in Urdu and English, reviewed the
translated passages to ensure accuracy. The researcher checked the transcription and translation
of all the transcripts. Data analyses were completed on Microsoft Word (version 2011).
3.2.4 Ethics
The Conjoint Health Research Ethics Board (CHREB) at the University of Calgary
granted ethical approval (REB14-1709).
The study was explained before the interview was initiated, and the women were asked
for verbal and written consent via the consent form. They were informed about the use, purpose
26
and goal of obtaining the data, and the right to withdraw at any time (Appendix IV). If they were
uncomfortable, they could skip any question(s) they did not wish to answer during the interview,
or withdraw if they no longer wanted to participate.
All participants were assigned a unique number and no personal identifying information
was asked during the interview other than demographic information. By assigning participants a
number, their privacy was protected during the transcription and translation of the interviews and
data analysis. Participants were not able to participate in the study until they signed the consent
form.
The audio recorders were kept in a locker located in a secure University of Calgary
office, accessible only to the researcher and supervisor. The audio recordings were stored as
password-protected files and were encrypted when sent for transcription and translation. The
transcriber signed a confidentiality agreement and was given one interview at a time. The
translator also signed a confidentiality agreement, as well as an affidavit that the translation
represented the true meaning of the original transcript. Electronic data were stored on a
password-protected laptop, printed transcripts were stored in a locked filing cabinet, and audio
recordings were stored on a password-protected encrypted USB key.
There were no specific risks from participating in the study, and participants were
advised to raise any concerns during the interview. Women were not offered remuneration for
participating in the study. They were informed that as an indirect benefit, the study results would
help understand the barriers to cervical cancer screening faced by South Asian Muslim
immigrants in Calgary and may lead to programs that can help increase future screening rates.
27
3.2.5 Data Analyses
A cyclical process of data analyses was followed under the guidance of Dr. Hebert, a
member of the supervising committee and an expert in conducting qualitative research.
Decisions involving data analyses (i.e. identifying themes and coding) were finalized after
agreement was reached between Dr. Hebert and interviewer (Syeda Kinza Rizvi).
The transcripts and field notes were analyzed thematically in six separate phases, as
described by Braun & Clarke (68). Thematic analyses were used to identify and report patterns in
the data and themes were identified at the semantic level.
Using an inductive approach, themes were identified from the data. The themes were not
coded using a pre-existing coding frame, literature review or researcher’s assumptions or
theoretical interest in this topic (69). Thus, this thematic analysis was data driven and identified
all relevant themes regardless of the previous research on this topic. The six phases of thematic
analyses were completed:
Phase 1: Familiarizing with the Data
All of the interviews were re-read several times for ideas and common patterns in the
transcript. The repeated reading of the data before coding was important to become familiar with
all aspects of the data as well as to take notes and generate ideas. At the end of this phase, a brief
list of interesting findings in the data was generated.
Phase 2: Generating Initial Codes
This phase involved generating codes from the transcripts. Coding generated labels for
data were relevant to the research objective. In generating initial codes from the data, each
transcript was broken down through line-by-line coding. All potential themes and patterns were
coded for the first six transcripts, then combined and revised in a separate Word document. After
28
the first six interviews were coded, the remaining phases of thematic analyses were conducted.
The same process was repeated for the next six consecutive interviews, until all the transcripts
were completed.
Phase 3: Searching for Themes
This step involved constructing patterns from the codes that were relevant to the research
objective. Codes were categorized into major themes that represented the participants’
perspectives and made most sense to the topic. For each theme, all relevant codes were sorted
and collated with the transcript data to generate the coding structure (Appendix V). This included
all the identified themes and codes that continued to evolve through the analysis. Once a
potential list of themes was developed, the relationship between codes and their respective
themes were examined. Later, the themes were compared to ensure they were distinct from one
another.
Phase 4: Reviewing Themes
In this phase, all identified themes and sub-themes were refined and reviewed in two
steps. Each theme was examined with its respective codes for a pattern, and then with the
previously analysed transcripts. In the first step, themes were either re-characterized as subthemes (due to lack of data support) or vice versa as further transcripts were analyzed. Other
themes were combined together or divided into separate sub-themes. This step made certain that
data within each theme was combined meaningfully, with a clear distinction from other themes.
In the second step, after every six transcripts were analyzed, each theme and their data
extracts were checked and compared with the previously analyzed data set. The continuous
investigation of themes with the analyzed data ensured all themes were captured and were
representative of the data set.
29
Phase 5: Defining & Naming Themes
This phase further refined and defined all the themes using the analyzed data. The
concept and meaning of each theme and its relationship to other themes and the research
questions were examined. As coding was an ongoing process, themes continued to be re-coded
and re-categorized. The title, definition and position of themes also continued to evolve and by
the end of this phase, themes and their titles were confirmed for the final write up.
Phase 6: Writing
The last step of thematic analysis involved writing a coherent analysis of all the findings.
The themes were defined with their respective sub-themes using data extracts to present the
significance and prevalence of themes. The quotations in the final report were chosen to be
simple but capture the essence of the finding being presented without unnecessary detail.
Familiarize with Data Write Up!
Coding Define & Name Themes Review Themes
Figure 3.1: Braun & Clarke (2013) Thematic Analysis
30
Search for Themes In summary, thematic analysis was used to analyze the data. Transcripts were coded and
combined into broader categories in order to identify themes. Subsequently, themes were refined
and revised several times as the remaining interviews were analyzed. Through this process, the
relationships among themes became apparent. Upon completion of all the interviews, a final
round of data analysis was conducted to compare, contrast, and identify the essence of the
themes.
3.2.6 Reflexivity
It is acknowledged that derived themes, in addition to data, also reflect the researcher’s
prior experience and knowledge. An important aspect of conducting qualitative research is to
consider the researcher’s social location and reflexivity that accounts for the researcher’s
influence on the study. This section describes the researcher’s (Syeda Kinza Rizvi) social
location and the measures taken to remain reflexive.
I am a 26-year-old woman from Pakistan who, immigrated to Canada in 2004 at the age
of fourteen. As both a Muslim and South Asian female, it is important to address the potential
influence of my presence on the study as I conducted the interviews and analyzed the data.
I experienced the transition of entering Canada from Pakistan, and becoming a Canadian
citizen. I believe that my social, cultural and personal characteristics allowed Muslim women to
be more comfortable during the interview process. Since discussing cervical cancer is often
considered culturally inappropriate because it involves sexuality, people are more willing to
express less socially acceptable viewpoints to those with a similar background (66). South Asian
Muslim women are less likely to share their experiences, and would hesitate to express
viewpoints they assume would be controversial or unexpected, to researchers with a different
31
background. However, due to the similarity in backgrounds and the cultural and religious
understanding between the participants and myself, they were able to share their experiences and
perspectives regarding many topics. Additionally, I speak other languages (Urdu, Punjabi,
Sindhi, Hindi) that helped participants share their ideas in their own language, that were difficult
to translate in English.
To remain reflexive, I used an interview guide and asked participants for further
clarification on their thoughts, rather than relying on nonverbal cues. Additionally, I
concentrated on the repetition of emerging themes, and focused on the data, in order to distance
myself from my own experiences and perceptions. By maintaining the attitude of interested but
detached researcher, I was able to draw out the participants’ opinions and view of the topic.
These measures allowed me to remain reflexive and be aware of my social location in relation to
the study participants.
32
RESULTS
4.1 Background
The purpose of this study was to identify perceived barriers to cervical cancer screening
among South Asian Muslim immigrant women in Calgary. This chapter begins with a
description of participants’ characteristics, followed by the findings from interviews conducted
with them. The interview findings, which form the remainder of the chapter, were compiled into
four major themes, that are presented in Table 4.1.
Table 4.1: Four Major Themes & Sub-Themes
Category
Theme
1
Attitudes, Knowledge,
Beliefs & Practices
-Knowledge about
cervical cancer &
screening
-Preferences for
physician characteristics
Subthemes
-Cultural and religious
norms
-Views about healthcare
screening
-Healthcare seeking
practices
2
Experience with
Healthcare System &
Services
-Healthcare systems
in Pakistan,
Bangladesh &
Canada
-General experiences
with healthcare
providers
-General experiences
with healthcare
system
-Pap test experience
33
3
Barriers to Pap
Testing
-Healthcare
provider
barriers
-Healthcare
system barriers
-Personal
barriers
-No barrier
4
Strategies to
Encourage Pap
Testing
-Healthcare
provider
strategies
-Healthcare
system
strategies
4.2 Sample Characteristics
Participants’ demographic information is shown in Table 4.1. Eighteen women were
interviewed, ranging in age from 25 to 46 years (mean age of 35 years). Participants were
married, except for one who was divorced, and the majority of them had children. The study
population was well educated; 83% (n=15) of the participants had higher than high school level
education. Their partners were also well educated. They had lived in Canada from two months to
15 years (mean seven years). The majority of the women had never had a Pap test (n=11), while
others had undergone the procedure (n=5) or were not sure (n=2) they had been tested. Most
participants reported that they had a female family physician. Fluency in English also varied in
the sample. Some women were easy to understand and expressed their ideas clearly while others
had difficulty communicating in English. In the latter case, after several failed attempts in
English, the interviewer asked the interview questions in Urdu and allowed the participant to
respond in Urdu as well. Overall, the study population was heterogeneous, varying in factors
such as length of stay in Canada, and prior education etc.
Cervical cancer screening is a difficult topic for South Asian Muslim immigrant women
to discuss; most participants were uncomfortable talking about this topic. However, all women
interviewed were willing to share their experiences and opinions and replied to almost all of the
questions. Even the most reticent participants shared their healthcare experiences, when told
about the purpose of the study and how it could potentially improve the current and future
healthcare system. There were a limited number of accounts about cervical screening, since most
women had never had a Pap test. The participants’ personal accounts demonstrated both positive
and negative experiences with healthcare providers and systems, as well their underlying beliefs
and values.
34
Table 4.2: Sample Characteristics
Demographic Variables
Age
25-30
31-35
36-40
41-45
46-50
N
%
3
7
5
1
2
17
39
28
5
11
Highest level of Education
High school graduate
Undergraduate degree
Master’s degree
Professional degree
3
6
7
2
17
33
39
11
Children
Yes
No
15
3
83
17
Origin
Pakistan
Bangladesh
16
2
89
11
Pap test
Never had one
Had a Pap test
Not sure
11
5
2
61
28
11
Years in Canada
<1
1-4
5-8
9-12
13-16
2
4
4
4
4
11
22
22
22
22
Marital Status
Married
Divorced
17
1
94
6
Area of Residence in Calgary
North West
North East
South West
7
7
4
39
39
22
35
Demographic Variables
Family Physician
Female
Male
No family physician
N
%
10
3
5
55
17
28
Job
Full-time
4
Part-time
2
Do not work
12
4.3 Attitudes, Knowledge, Beliefs and Practices
22
11
67
4.3.1 Knowledge about Cervical Cancer and Screening
All participants were questioned about their level of knowledge of cervical cancer and
screening. Although a few participants (n=2) were aware of preventive measures and screening
guidelines, most of the women (n=16) either had a lack of knowledge or misunderstanding about
these topics.
4.3.1.1 Existing Knowledge about Cervical Cancer and Screening
Some participants had prior knowledge about cervical cancer and the current guidelines
for Pap testing. For example, one participant was aware that having more than one sexual partner
is not the only risk factor for cervical cancer:
“Multiple partners can increase risk of many other problems, diseases and things.
So, but that shouldn’t be the only factor, it could be one of the reasons to have
more of screening. But I think being active (sexually) is enough reason.”
(Participant 10)
36
Another participant, whose mother is a gynecologist in Bangladesh, was aware that
cervical cancer is preventable and she had already been vaccinated with the Human
Papillomavirus (HPV) vaccine.
“In our country (Bangladesh), Pap test is not that much popular. But for some
reason, you know like the vaccination, because pharmaceutical companies are
introducing that, there is a business thing there. And that’s why gynaecologists
are always, you know, recommend their patients to take that vaccination. And my
mom was a gynaecologist. That’s the reason that I got that one.” (Participant 18)
One participants with some knowledge about screening mentioned that if she had not had
her baby delivered in Canada, she was not sure if Pap testing information would have been
provided to her.
4.3.1.2 Knowledge Gaps about Cervical Cancer and Screening
The majority of the participants had little knowledge of cervical cancer. For example,
they were not sure if it was preventable or whether only females could develop the disease. Some
women (n=4) were not sure what the terms “cervix” and “cervical cancer” meant or where the
cervix was located in the body. One participant attested that women are more educated about
breast cancer than cervical cancer. Another participant noted that immigrant women in particular,
may not recognize the importance of cervical cancer screening:
“I see so many women who don’t have the necessary knowledge, or who come
from an uneducated background and who’re still learning how to speak English
over here, and who don’t understand the significance of cancer screening.”
(Participant 9)
37
Some participants (n=2) did not know that Pap testing is only recommended for sexually
active females. There was also some confusion among three participants about whether having a
Pap test would affect a woman’s virginity. One participant noted that as virginity is culturally
very important to the Muslim community, women who are not sexually active would be likely to
avoid Pap testing to remain a virgin:
“An unmarried woman, even in her mid to late twenties or even thirties, or
beyond, would be more reluctant to have this test, because there’s this whole
concept of keeping the virginity intact and all of that. I’m guessing that any
woman who’s not sexually active is not going to get herself tested because of the
virginity aspect and the importance of that she will stay away from Pap test.”
(Participant 9)
None of the participants knew that the current guidelines suggest that Pap testing should
be done every three years; all of those interviewed ‘guessed’ that Pap tests should be conducted
every six months, annually or every two years. This lack of knowledge is surprising, given that
most of the participants had a family physician from their own community and one participant
was a physician herself, from Pakistan.
As well as not knowing about cervical cancer and screening, some of the participants had
the wrong information. For example, regarding the causes of cancer, one participant thought that
it was “infectious” while another participant thought that using public washrooms can cause
cervical cancer. One woman suggested that cervical cancer is more prevalent in areas with poor
hygienic practices:
“I don’t know here in North America, but I can tell about in South Asia, people
who are living in the village, they are more affected (by cervical cancer). In these
places like, I saw some people some village, like because they don’t like there’re
38
some hygiene things you have to maintain after the delivery of the baby, and they
don’t do it.” (Participant 17)
Some women also misunderstood who was at risk and considered cervical cancer to be
“preventable” if it was detected at an early stage, yet they did not get Pap tested. Preventable at
an early stage means the detection and treatment of pre-cancer lesions, before any symptoms
develop and not once the cancer has had time to develop; for this Pap tests are essential. These
responses by participants shows that participants misinterpreted or misunderstood the timing
factor of the window of detection of cancer, in relation to its prevention and the definitions of
cancer and pre-cancerous symptoms were not clearly understood by the participants. Other
participants assumed that this type of cancer only occurred in older women, so a Pap test is not
required until later in life:
“Some cancer such as cervical cancer, breast cancer, happens after forty, or after
fifty, so I just said well, you know, I’m thirty-three, don’t need to get myself tested
that often, so it’s also that mindset that comes into play.” (Participant 9)
Pap testing was also considered by one participant to be inappropriate at an early age:
“I heard about Pap testing but it was more towards a mom’s friend or someone
much older. It wasn’t something that…even with mammograms, it’s pretty much a
taboo for a woman in her thirties or early forties to even think about getting a
mammogram done. So cancer of such nature, it’s still thought of something that
may occur much, much later in your life.” (Participant 9).
Some participants felt that the test was unnecessary for women living with only one male
partner or for post-menopausal women. The Pap test procedure itself was another topic where
39
there was misunderstanding. For example, some women thought that the test could be done
during menstruation.
4.3.2 Preference for Physician Characteristics
For most Canadians, having a family physician is important for maintaining their own
health and the health of their family. One sub-theme that emerged in this study was that for many
participants, the choice of a family physician was quite complex. Participants often had specific
criteria for their doctors; most of these preferences were social and cultural, rather than just
medical. While some participants had very specific requirements and would not compromise on
their choice, others were flexible, depending on their circumstances.
4.3.2.1 Gender
The most common preference expressed by the participants was for a female physician,
even among those who have a male family physician. However, with further discussion it
became apparent that the male family physicians were seen for general care or when children
were involved, but were excluded when any gynaecological issues were involved. For their own
personal needs, the women would see a particular female physician on a walk-in basis at the
same clinic as their male family physician. Hence, the requirement for female physician could be
waived, depending on the type of care required:
“But you don’t always need female doctors, but in certain cases you do need
them. If I have a strep throat or something, I don’t care if it’s a male or a
female.” (Participant 11)
40
Participants further reported that most of their male family members would go to the
same clinic and physician that the women go to, while some would go to the same clinic but see
a different (male) physician. In contrast to the women interviewed, who sought a particular
female family or walk-in physician every time, the participants reported that the males in the
family would go to any available physician.
Participants also stated that female physician preference was not limited to Muslim
women, as their friends from other religious and cultural backgrounds also has similar preference
for physician. In general, participants preferred gender congruency with their doctors - a female
physician for themselves and the opposite for the males in the family, and girls before puberty:
“I usually have friends in Muslim community and in general, yes, when it comes
to ourselves, we prefer a female doctor, but when the family’s involved, like kids
or something, then we don’t have issues right, we can go to any doctor, rather I
think are some people preferring male doctor for their kids. But when it comes to
themselves, to the ladies, then usually they prefer female doctors.” (Participant
10)
However, for gynaecological needs, several women felt that a female physician is
absolutely necessary. The reasons given for this strong preference included the conservatism of
the South Asian community, the feeling that another woman would be able to understand their
problems, and their discomfort with being examined by a male doctor:
“I believe, like for the gynaecological problems like, people who comes from
those like, South Asia, we are pretty conservative, and we grew up in that way
that you cannot discuss these issues with male…I find that female doctors
understand female stuff because they are going through the same phase because
41
when I went to my female doctor, I asked her a lot of question, and she said she
had the same problem.” (Participant 18)
Women with strong preference for a female gynaecologist for obstetrics often took extra
measures to get one. For example, going to another city or making prior arrangements to get a
female gynaecologist. Many participants stated that most South Asian women would not like to
be examined by a male physician, as this would make them uncomfortable. The preference for
female physicians is not necessarily because of religious reasons only, but comfort too. For
example, one participant’s eight-year-old daughter preferred a female physician without being
told by her mother; she is more comfortable with them.
For the majority of interviewees, the following quote would represent their preference:
“It’s mainly they have to be a female, because when you are a girl, there are
things that you don’t wanna be talking to a male doctor for. And that’s my biggest
thing is, it has to be a female. Because especially in our culture, most women are
wanting to go to female doctors.” (Participant 12)
Given the above quote and the cultural and religious norms of the Muslim community
(discussed in section 4.3.3), it is interesting to note that two participants did not have a gender
preference for their physician and/or gynaecologist. One participant noted that regardless of the
physician’s gender, the physical exam itself is uncomfortable:
“I really don’t care. My gynecologist, when I was even back home in Pakistan, he was a
male.... Because whatever barriers I will have from the male doctor, I will have same
from the female doctor. Honestly speaking I went for my physical, they wanted to do
inside, and I was not comfortable, and though it was a female doctor… that’s why it
42
doesn’t matter because if I’m uncomfortable in one thing with the male doctor, I know I
will be uncomfortable with the female doctor as well.” (Participant 8).
4.3.2.2 Language and Cultural Background of Physician
Participants also preferred to have a family physician and gynecologist who speaks the
same language, as this allowed them to communicate better and explain their symptoms. Even
participants fluent in English said that they were more comfortable with a same-language
physician:
“The problem is that I am trying to explain something and I don't have the right
words for it. And if you say it in your own language maybe the other doctor will
understand because the pain that you're feeling, you know the right word for it in
your own language. But you can't explain it in English, even though I know I can
speak good English. But I have always been unable to explain my problem to my
doctor. So I feel if somebody could speak my own language, I would have felt
more comfortable.” (Participant 2)
Similarly, other participants preferred physicians from the same cultural background, as
they felt that they would be better understood, linguistically, culturally and emotionally. Cultural
background could include the same religious background (i.e. Muslim) or, as the following
participant stated, the same geographical area (in this case Pakistan):
“Because they are of the same background as I am, I do feel comfortable with
them. I think that when I go to them and if I say you know, this is the medication
that I used to take in Pakistan, they understand, they know about that medicine.
So that automatically makes me feel comfortable, as opposed to the you know, not
knowing what I’m talking about…I live on the opposite end of the city, but I go all
the way there just because they are of the same cultural background as I am, and
they understand where I’m coming from. If I say oh this is my health concern or
43
even social concern or anything else, so they understand where I’m coming from,
so that’s why I prefer to go there.” (Participant 9)
However, participants noted that it was difficult to find physicians with the same cultural
background, as many doctors from their community were unable to take on new patients.
4.3.2.3 Healthcare Providers’ Medical and Interpersonal Skills
When asked about the skills that they expected in a physician, the interviewees desired
both medical and interpersonal skills. The desired medical skills in their physician were those of
being highly knowledgeable and being aware of their medical history.
The preferred interpersonal skills of physicians included showing concern, empathy,
being courteous, understanding and good listeners, all of which, in themselves, can help to
resolve health concerns:
“So, every time you’re not supposed to be given like, the prescription or
something like that. But sometimes you have to cure some disease by your
(physician) talking to her and giving her time and the most important is that.”
(Participant 14)
Participants desired physicians with good communication skills by paying attention,
being good listeners and being able to convey information in a way that was understandable.
Many participants stated that physicians should also be helping immigrants to navigate the
medical system, from diagnosis to treatment. This includes what is happening to them
(disease/symptom), what is expected of them (diagnostic measures/precautions), and what they
can expect to happen (possible outcomes of the treatment/disease). Participants would like their
physicians to provide detailed information on how the Canadian healthcare system works.
44
Physicians should present information in a step-by-step manner from diagnosis to treatment of
diseases as noted by some participants. Information about the importance of preventive measures
and diseases that particularly affect women should also be provided:
“I think it would be walking your patient through the process, because we often
don’t. I’m only talking for… I mean I can only speak for myself. I was educated
back home, I come from a pretty good family and everything, and I have the
ability to understand things, but so even then I found I didn’t understand the
Canadian processes. So I didn’t understand that okay, there’s a family doctor,
and then the family doctor refers you to another specialist…you know, just basic
things, or that God forbid if they see something, this is what you’re supposed to
[do]; this is the next step, or this is the step after. It’s just that entire process. And
I think at times, we just let things be. Or for example, I might not go for a blood
test, or I might not do something because I don’t know what the end result…what
the next step is, or what the step after that is, what are they looking for. And it just
seems too much of a hassle at times.” (Participant 9)
Similarly, participants also desired physicians to give them more attention and spend time
during appointments to consult about their health issues. They expected more time from their
physicians; this was more important for a few women than any other physician characteristic.
Many participants felt rushed in appointments by their physicians:
“I would like them (physicians) to spend a little bit more time with the patient. I
feel because the way their system is, they want to see maximum amount of patients
as fast as they could go. So I wish they would spend a bit more time with me. I
really feel very rushed whenever I go to a Canadian doctor.” (Participant 4)
These physicians (family or walk-in) who are practicing in Canada, have
graduated from Canada or other countries and come from various ethnic backgrounds:
45
“Time, because what I have faced is, whichever doctor, they’re always in a
hurry. So they don’t want to give you the time which is not over, but that which is
required, so they are always in a hurry. So that is what I expect from my doctor;
when a patient walks into their clinic, so they want attention and they want them
to listen. Even [if] it’s a smaller problem, or a bigger [one], but what I want as a
patient, I want him to give me his full attention. What I’ve found is lack of
attention, usually they are in hurry.” (Participant 10)
Among these features, the women interviewed deemed the most important characteristics
were a female physician, who was highly knowledgeable and had good communication skills,
since these would likely result in better diagnoses, and their understanding of these. This would
also build their confidence in physicians. As one participant noted:
“Obviously he should be helpful and understanding, and he should not tell you
that the complaints you are making is in your head. It’s not psychological, he
should be able to understand and help. But all they do is get all this test, and if the
test come okay, and the patient still complains that we have some problems, they
will say the tests are fine and it’s all in your head. So that should not be the case.
Otherwise like, for myself I lost the trust.” (Participant 11)
Some women wanted physicians who were readily available for appointments, for them
and, especially, their children. The majority of women interviewed for the study preferred
physicians who were located nearby.
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4.3.3
Cultural and Religious Norms
Cultural Factors
In South Asian Muslim culture, women are primarily responsible for the health and
wellbeing of their family. They often make major decisions and place everyone else in the family
before themselves. For example, one participant mentioned how her mother despite not feeling
well would cook for the entire family by herself.
Culturally, women usually defer to their husbands wishes and expectations. They would
always ask their husbands’ permission to be seen by a male physician; usually the spouses would
agree. One participant stated:
“My husband would be involved. I always ask him like, is it alright if I can see a
male doctor? And then he says yes.” (Participant 2).
One participant with no gender preference for general physician and gynaecologist still
had to seek a female physician, as her husband preferred it:
“I would be okay with going to a male physician even then, but I know that if I
was still married and with my husband, he would prefer that I go to a female
physician. So we do have that cultural barrier, even if the woman is willing, her
spouse or her partner might not like it that way.” (Participant 9)
She also noted that her friends and other community members would judge her for seeing
a male physician (particularly a male gynaecologist):
“When I was having my baby, because there was a wonderful male doctor,
gynaecologist available, my family doctor referred me to him. And I was okay
with it, but I’m not telling any of my friends about it. So when there’s a discussion
comes up about who their gynaecologist, I refrain from saying I had a male
47
gynaecologist. He was wonderful, very professional, and if I were to have another
child and if he was my gynaecologist again, I wouldn’t have a problem with that.
But then again I wouldn’t be telling my social circle about having a male…They
will be very judgemental.” (Participant 9)
The South Asian Muslim community is modest and women do not discuss private issues
or take part in physical examinations that involve private parts, such as Pap testing:
“In our community, we’re pretty conservative about talking about these issues.”
(Participant 18).
It would also be culturally inappropriate to discuss such issues even with family
members. The women were taught, at an early age, that they should not get their genital area
checked by anyone, especially before marriage. For instance, getting reproductive organs
checked due to issues with menstruation. For this reason, Pap testing is not a cultural norm for
women in Pakistan and Bangladesh. One participant described the community as consisting of
two types of people: one group of women, who were knowledgeable, would get checked when
they had any symptoms, while others, who lacked knowledge, ignored their symptoms.
Religious Factors
Islamic teachings prioritize health and health care, and the participants stated that, in an
emergency, it would be acceptable to have life-saving treatment by any physician, regardless
gender. There is no obligation to avoid a male physician in a life and death situation:
“It’s just that according to Islam, what we were taught is that your health comes
first. So it's not like you have to see a female doctor if you're a female, or you
have to see a male doctor if you're a male. It's just that you have to save the life;
48
it's a gift of God, and you have to save it, so it's important. So for me, it's not a
problem, 'cause like I was delivered... so, I had my C-section by a male doctor,
and never had any issues.” (Participant 1)
A majority of participants stated that Islamic beliefs did not prevent or discourage Pap
testing. Interestingly, one participant gave an example where she assumed religious women
would be less likely to have a Pap test. However, she later discovered that females from a very
religious family had been regularly undergoing Pap tests, due to a family member’s history of
uterine problems. One participant attested that the Islam religion definitely plays a role in getting
a Pap test, saying that the majority of Muslim women would only get tested by a female
physician:
“That would be very, very hard (Pap test by a male physician), because then
religion comes in to play for a Muslim woman…I guess ninety-nine percent of
Muslim women would not want to go to a male physician for that purpose.”
(Participant 9)
Islamic religion encourages modesty and covering the body, especially the genitals, and,
unless cervical screening is absolutely necessary, Muslim women usually abide by this custom.
Another participant emphasized the need for a female physician to conduct Pap testing due to
religious beliefs:
“Yeah, and it’s prohibited in Islam; I cannot get my clothes off in front of a male.”
(Participant 17).
49
It should be noted that participants considered preventative treatment that saves life
different from life-saving treatment in emergencies. Treatment is acceptable from any physician
to save a life but not while practicing preventive measures.
4.3.4 Views about Healthcare Screening (Specifically, Cancer)
Participants considered screening as an important technology and stated that every
woman should be proactive and take responsibility for her own health, by getting regular
screening done. Despite participants not having had a Pap test themselves, they still advocated
that screening should be done when there is something wrong, when the physician asked them to
undergo the test, and just to be on the safe side:
“I think they’re very important; anything that can be found at an early stage is
better that to find it at a much later stage. I admit, it’s daunting, I mean until you
receive the results, it sits there at the back of your head and you from time to time,
think about it. But I think once you receive a result then you’re like, for the next
so many years or so many months, I’m good. And just to know that, this feeling
surpasses that initial feeling of reluctance to get the test done.” (Participant 8)
Another participant who got Pap tested in the past, but currently does not practice regular
screening, stated:
“I think it’s kind a good thing; it’s a preventive measure, and if you know it like
ahead of time, obviously doctors can be able to help you and you are warned and
you know what to do, what not to do. Yes, so it is a good thing to do.”
(Participant 11)
50
4.3.5
Healthcare Seeking Practices
With these women declaring that screening for cancer prevention and early detection is
advisable, but doing little about it, during the interviews I asked the participants about their
healthcare seeking practices in an emergency. Their healthcare seeking behaviour was dependent
on the type of situation the person was in. From the data, two scenarios emerged:
i)
Emergency/life and death situation; and
ii)
Prevention Measures/Screening
4.3.5.1 Emergency/Life & Death Situation
Participants were asked whether or not they would get treated in an emergency, if their
desired physician was unavailable. While most participants agreed that they would get medical
treatment, some said that they would not, if the physicians were male or not knowledgeable, as
demonstrated by experience with their family members:
“Because I’ve seen in my family, my mom, my aunts, they are very very rigid, they
won’t go to a male doctor, if it’s a dying situation.” (Participant 17)
For the majority of the women, in an emergency and without other available options,
practical considerations would lead them to accept treatment from any physician, irrespective of
gender. As noted in section 4.3.3, Islam does not mandate that women must see a female in an
emergency situation. In fact, some women reported that their babies had been delivered by male
gynaecologists, despite prior requests and/or confirmed arrangements with female physicians.
The female physicians were either unavailable or the hospitals did not arrange for it. The
51
participants who shared these childbirth experiences did not reject such medical aid, nor did they
regret seeing a male physician in an emergency and were supported by their husbands.
Participants were also asked who else would be involved in making decisions about
seeking healthcare in an emergency for themselves. In addition to these women themselves
making decisions about seeking healthcare in an emergency, their husbands or families would
mostly be involved. In some instances, their husband or/and family would only be involved if the
women were unable to decide for themselves.
4.3.5.2 Preventive Measures/Screening
Many interviewees noted, repeatedly, that in their home country, people only seek
symptomatic treatment. Participants and their families would only seek medical care if
symptoms were severe:
“…Because I would only go and see my physician if there is an urgency; if I think
there is something definitely wrong with me. That's the only way I'll go and see
my physician. I wouldn't go and see my physician if I have a cold or flu-like
symptoms, never.” (Participant 3)
According to the participants, preventive measures were uncommon in their home
country and sometimes overlooked for various reasons. These included: fatalist beliefs that
preventive measures could not stop what was destined to happen, lack of awareness about
preventive measures and/or considering it unnecessary. Many participants had not had any or
regular annual examinations recently. When asked about preventive measures, one participant
stated:
52
“I heard about it (Pap test), but people don’t put so much stress on those things.
And like the way I grew up, when you need something, you get it done.
Unnecessarily we don’t you know, pursue things... My health is important but
then I do not put so much stress in going to doctors and always getting myself
checked. And I will only get myself checked when I feel like something is wrong.
Maybe it’s the mindset, it’s a personal choice.” (Participant 11)
Similar to other preventive screening such as mammograms, Pap testing was not common
in Pakistan and Bangladesh and most women would not get tested unless they had symptoms,
such as excessive bleeding:
“I never heard about cervical cancer screening where I come from [Pakistan].”
(Participant 1).
The participants’ Pap testing history was varied; most of the women reported that they
had never had a Pap test. Conversely, one participant had been regularly screened in Pakistan
and continued to be proactive in Canada, asking for the Pap test during appointments with her
female gynaecologist. Some participants had only been tested once in the last 10 years in Canada
(and Kuwait for one participant). Another participant did not remember if she had ever had a Pap
test in Canada:
“I'm not sure. Actually, I got married. I came on visit visa here, and my husband
applied for my immigration here in Canada. So I think I might have gotten a Pap
test done here in Canada, but I don't think so. I don't remember a Pap test.”
(Participant 2)
In spite of a varied history of getting tested, the majority of the women were willing to
get Pap tests done; this reinforces their views on screening (discussed in section 4.3.4). One
53
participant noted that if someone had previously explained the significance and importance of
Pap testing to her, she would have been tested right away. This extends to being more
knowledgeable about the purpose and benefits of testing:
“The more and more they know [immigrant women] about it so again I said,
they’ll be willing to take every kind of test as long as it’s involved their health and
everything. But if they’re given proper information…and then they were given
choice, I think everybody would be taking it.” (Participant 10)
One participant’s friend had recently been diagnosed with cervical cancer; this had
motivated her to get tested.
4.4 Experience with Healthcare Systems and Services
Immigrants come to Canada from a wide range of backgrounds, financial situations and
social statuses. To better understand the barriers and the perceptions of barriers to Pap testing for
South Asian Muslim women, it was important to explore their experiences with the healthcare
system and healthcare providers in Canada and in their home countries. Information about
experiences of South Asia women will help us to better understand their culturally specific
issues, and lead to better physician-patient interaction in the future.
4.4.1 Healthcare Systems in Pakistan, Bangladesh and Canada
According to the participants, the healthcare systems in Pakistan and Bangladesh are very
different from that in Canada, in terms of quality of care as well as availability of physicians and
resources. Many participants stated that the healthcare systems in their countries of origin were
inconsistent and quality of care is dependent on the patients’ financial status. Additionally,
54
healthcare services in Pakistani and Bangladeshi villages ranged from very limited to nonexistent. Pakistan and Bangladesh have free, federally funded public healthcare and optional
private healthcare, which is very expensive. This led to a degree of variability in the health care
provided:
“In Pakistan their health care is not consistent. My father is a doctor, most of my
family members are doctors, so I came from a very aware background, and I
could afford to pay for all these tests. But I know that there are people who can’t
even afford to buy medicine for their child if they have an infection or something,
many people die of that. So there is a lot of variety from Pakistan. You’ll find
Harvard educated people from Pakistan and then you’ll find people who, you
don’t know they’re from Stone Ages.” (Participant 4)
According to participants who were able to afford private care in Pakistan or Bangladesh,
this, was readily available:
“[Waiting time] it’s just for the villagers. People who are going to the government
hospital.” (Participant 17).
Although there were no waiting times to see any healthcare provider, quality healthcare
was hard to find:
“I think there’s just so many doctors there [Pakistan]. There’s actually [an]
abundance of doctors, so no I don’t think they usually have problems finding
doctors. It’s always hard finding a good doctor, but I highly doubt they have any
problems finding doctors.” (Participant 12)
Many participants’ experience with the Canadian healthcare system was unfavourable,
due to long wait times. In contrast, in Pakistan and Bangladesh they could see any specialist right
55
away (family physician referral was not needed there). One participant felt that waiting times in
Canada were due to free healthcare:
“You pay money there [Pakistan]. You pay lots of money and you get in right
away, in a minute or two. But here [Canada], probably they don’t want us to take
it for granted, so they make us wait even though they’re free inside. They’re just
sitting, there’re lots of beds inside and they keep us on wait, and telling us there
are no beds. We’ll fit you in as soon as a bed comes in, or… something like that.”
(Participant 13)
All participants agreed that finding a female physician was not difficult in Pakistan and
Bangladesh, either in the public or private healthcare systems, since the majority of the
gynaecologists were female:
“No, it’s not hard in Pakistan to find a female physician because basically all the
‘gyne’, our sex related doctors are females in Pakistan, mostly females.”
(Participant 15).
“It’s easy, there’re a lot of female gynaecologists in my country [Bangladesh].”
(Participant 18).
Additionally, awareness of cervical cancer among South Asian immigrants largely
depended on their background according to some participants (n=4). In Pakistan and Bangladesh,
most of the population lives in rural areas rather than urban centres. Women in rural areas could
develop cervical cancer, but, due to financial constraints and unavailability of healthcare
resources, they may never get diagnosed and the reason of their death would remain unknown:
“We have to consider what kind of backgrounds they're coming from… Not
everybody in Pakistan comes from a privileged background where health care
56
facilities are readily available to them. There are more people living in smaller
cities and towns in Pakistan, than in bigger cities and towns. So maybe there are
women like that who had cervical cancer in their lives, right but just because they
didn't have the money, or the facility to actually go and checked it out, so
they're...the reason why they died, nobody gets to know that.” (Participant 3)
Furthermore, Pap tests are expensive and women have to pay for it themselves.
Participants thought that women in Pakistan would not get Pap tests done for this reason. Cost
was also an issue in Bangladesh that can prevent women from Pap testing, as one participant
stated:
“I think the cost. Here [Canada] like government supports this test. It’s really
good, but back home it’s the cost.” (Participant 17).
The majority of Pakistani physicians did not recommend and/or ask for Pap testing, since
they either did not know about it or were unsure that it was necessary. Participants mentioned
lack of knowledge among women and physicians and time to get Pap test as the major barriers to
screening in Pakistan and Bangladesh.
4.4.2 General Experiences with Healthcare Providers
Participants were asked about their experiences with the healthcare providers (physicians,
nurses social workers) in Canada. Participants’ preferences for physician characteristics
mentioned in section 4.3.2, and their experiences with physicians in their home country,
influenced their experience with healthcare providers. The experiences were categorized into
negative and positive experiences.
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4.4.2.1 Positive Experiences with Healthcare Providers
Some participants stated that they have had good overall experiences with healthcare
providers in Canada. They described their physicians as knowledgeable, courteous, experienced
and good listeners, who always explained procedures before starting and who took the time to
resolve their problems:
“My present doctor, she’s very much compassionate, and she supports us, and she
told us that these are the areas you should look into, and she also told us that you
can take you know, I forgot how you say…the counsellor service if you want.
Sometimes we have some health issues which need you know, counselling and it
suits you from inside. Only medicine cannot do that, and so I like my present
physician. That is another reason that I like her.” (Participant 18)
Another participant had a positive experience with their physician, as well as with the clinic:
“From entering the clinic: they’re always welcoming and they don’t make you
wait longer... You go and talk, and they’ll even book you on phone if you have a
problem, they’ll book you for the same day, they try to accommodate you. So
that’s a good thing about that. Doctor A, even he’s a nice doctor too. He’s been
really helpful. Again, it has been very pleasant so far… most of the people I know,
they have been happier with the doctor. If not happier, then okay.” (Participant
10)
Some participants had good experiences with their physician due to sharing the same
language and background as them, and did not face any language or cultural barriers. This
supports their preference for physicians with the same language and background, as noted in
section 4.3.2. In contrast, one participant stated that being able to open up to a physician and
relate to them, emotionally, was not related to sharing the same background, but rather getting
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attention from the doctor. In addition to physicians, one participant had a good experience with a
nurse, whom she described as experienced and well-trained. The nurse was polite and thoughtful
and made her feel comfortable by giving her time and not rushing her during the appointment.
Only one participant noted a positive experience with a hospital and her gynecologist:
“I think it’s very good because recently, I delivered a baby. I’ve been treated
really, really, really good. I was there in the hospital for six days which hardly
any person is, after their delivery. Usually its forty-two hours, like a day or
maximum seventy-two hours, three days. But they kept me there for like six days
because I had bladder infection. So they wouldn’t let me go because I was not
feeling well and they were not confident that I would do it on my own as I had a
new baby. So they used to give me pills, the nurses were really nice, the surgeon
who did my delivery, he used to come every morning and check on me, how was I
doing. So I think it’s pretty good. It’s great.” (Participant 13)
4.4.2.2 Negative Experiences with Healthcare Providers
The majority of experiences reported by participants with the Canadian healthcare
providers and system were negative.
Many participants felt rushed by their physicians during appointments and were not
satisfied. Participants criticised the policy to discuss one health problem per appointment,
stating that it was problematic:
“Only thing is that per appointment, you have only can discuss one problem with
the physicians, you cannot discuss more than one problems with them…if you’re
sick, you’ll just go there, you can only discuss that problem if you’ve got flu. And
if you just want to ask them that can you please add this one more test or can you
discuss this, they will not discuss that.” (Participant 8)
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The suggestion to solve this problem was also mentioned:
“You should be allowed to discuss at least two or three problems in one
sitting…you’re taking out the time to go to the doctor because like doctors, we
also don’t have enough time that we can take time off that regularly from our
work and keep on going to the doctors. So it will be much more efficient if they
can take out more time for their patients.” (Participant 8)
Some participants had negative experiences with physicians, due to their lack of skills.
Participants reported that physicians sometimes were not knowledgeable and would like them to
be more informed and experienced in dealing with their health issues:
“They need some improvement. The physicians I find, they are not very updated.
In lots of things sometimes, they are lost, so that was my reason of not going to
doctors anymore… In some cases, yes, they need to, upgrade their education or
their information because there are some, like, research is going on and some of
the new medicine out there, and the doctors that I have met, they sometimes say
they don’t know about it. And they just told me not to go to internet and Google
anything. Because then you know, I feel like I knew more than them and they
didn’t like that.” (Participant 11)
She further noted that physicians would not discuss the information they found or provide
solutions for their health concerns:
“They never say ‘I will look into it’ and when...I asked them about the stretch
marks, they will say it depends on your body type, they won’t really guide you to
any creams or they will not say that do these kinds of exercises to make your body
more you know, flexible. But they will just say, “oh it depends on the size of the
child, it depends on from body to body” so those are not really helpful questions,
because in the end, you end up with lots of stretch marks.” (Participant 11)
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Another participant had to put in a Google search for her symptoms and possible
diagnosis for her health concerns, as her physician did not provide or explain this information in
sufficient detail. Many participants reported that physicians often did not inform immigrant
women about many things (e.g. Pap tests, annual physician check-ups, etc.) unless they
specifically asked about it, which was confusing to these women. Participants also felt that
family physicians did not communicate that they knew them, or remember their details from
prior consultations. Participants expressed that they felt a lack of connection with their family
physicians, as they expected their doctors to know them well:
“It’s like they kind of just want to hear the main concern and get out of there, even
though a family doctor should know a lot more than just what you’re in there for.
What’s happening at home, you know, they kinda’ need to know everything as a
package, because that’s your family doctor, they should understand you really
well. I think that’s what a family doctor…that’s a purpose, is they need to know
you on kind of a personal level. Rather than just meet and greet. I could go to a
walk-in clinic for that too right?” (Participant 12)
Another participant commented about their physician's lack of consideration of her
medical history. She had requested, multiple times, to be given a higher drug dose, as her
medical history indicated that a lower drug dosage was ineffective. Regardless of this, her
physicians would repeatedly start different treatments with a lower dose until they found it
ineffective, and finally increased the dosage. Another participant’s male physician was reluctant
to conduct an annual physical exam and referred her to a female physician.
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4.4.3
General Experiences with Healthcare System
Participants were asked about whether their experiences with the Canadian healthcare
system was influenced by their prior expectations and experiences with systems in their home
country (as discussed in section 4.4.1). The experiences were categorized into negative and
positive experiences.
4.4.3.1 Positive Experiences with the Canadian Healthcare System
Very few participants reported satisfaction with the Canadian health care system.
Participants who had positive experiences stated it as pleasant and they had not encountered any
major issues with the system:
“I didn’t find it difficult to get medical attention, or any kind of problem, I can say
it has been very pleasant so far. No big issues for me.” (Participant 10).
Some participants themselves, and some of their friends, were able to find the kind of
physician they preferred. One participant stated that finding a physician was not difficult in
Calgary, as a diverse group of physicians were available:
“When we were living in a big city for example in Calgary, here. The doctors are
diversified, like a lot of immigrant doctors are here so here it’s not a
problem…Here in Calgary you have lot of choices, like if we are not liking one
doctor, we can move to other. And sometimes we hear from our friends, you know
friends’ feedback, what they are feeling from their family doctor, and I know
couple of friends, they choose their friend’s doctor” (Participant 18).
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4.4.3.2 Negative Experiences with the Canadian Healthcare System
Waiting Time to See a Physician
Participants reported long waiting times to see a physician and specialist in Canada, while
in Pakistan and Bangladesh physicians and specialists were readily available in the private sector
(as discussed in section 4.4.1). Waiting times to see a physician were problematic, especially for
women with children. One participant urgently needed to see a physician for her children, and
could not wait for an appointment with their family physician. She went to a walk-in clinic
instead, where it took three hours to see a physician. Appointments with family physicians have
been an issue with other participants too; some reported that it could take up to two weeks to see
them. Often the participant’s health issue(s) was/were resolved by the time the appointment with
the physician came around, or nothing would show up during the appointment, as the issue was
not addressed in a timely manner:
“Getting an appointment with doctor is an issue, I see with most of
people…Usually they have to wait maybe days or sometimes weeks. One of my
friends, she had very, very severe lower back problem. It was something to do
with her back bone or something. And poor girl, she couldn’t get an appointment
for a scan for months. For months, not days, it’s for months! And by the time they
called her for…that’s MRI I think it’s called. She was okay by that time. So that
was one of the things I can mention, time that’s so late, either patient is okay or
that’s too late to cure.” (Participant 10)
Some participants mentioned that they still had to wait hours, even with an appointment:
“Getting an appointment isn’t an issue; you call in and you get an appointment a
week later or whatever, that’s okay... My biggest concern is once I go there, I still
have to wait about two hours or so, despite having an appointment. And that is
considered very normal, but for someone who has a very busy schedule and works
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full-time and is a single mom as well, that becomes sort of a concern. How do you
take the time out, how do you take those two or three hours out, just to wait,
before even getting in to see physician? (Participant 9)
Some participants have changed their family physicians, as they objected to the long
waiting times. Another participant wanted to see the specialist directly, without a referral from a
family physician, since she believes there are a limited number of family physicians in Canada.
Participants were also concerned with the waiting time in the emergency department in the
hospitals, especially when it involved their children:
“Because whenever you’re going to emergency, you have to wait there for five,
six hours until the person is like, dying then the nurse come, or the doctors come
and see the patient. So yes, that is not…I think that’s not good, because sometimes
if it’s a, it’s a kid, maybe twelve, thirteen years old or like, maybe two, three years
old, you know, infant to twelve, thirteen years old they don’t have the capacity to
bear the grief, you know. So I think this thing should be changed…In the hospital
the doctors and the nurse should be more, a more quicker treatment.”
(Participant 17)
Waiting time for test appointments was an issue for some participants:
“Times, yes, even if you’re pregnant. Like you have an appointment and you’re
sitting in the clinic sometimes, the wait goes more than expected. And once I had
this experience, like I was gonna have my ultrasound and I had drunk a lot of
water and the pressure was so much on me, but the wait was so long, like an hour
or more than that, and I wanted to go washroom. The nurse said that I couldn’t.
And that was really like, it was a bad experience…if someone wants to go
washroom, the nurse was not helpful. Like later on I learned even if you like, you
know, release a little bit it doesn’t really matter but at that time it was like…it was
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my first time and I didn’t know, and she was like, very rigid with it and it was very
hard on me.” (Participant 11)
Unavailability of Female Physicians
Participants described that negative experiences with the healthcare system occurred
when a female physician was unavailable and appropriate arrangements were not provided, or
when participants had to take extra measures to get a female physician. Some participants were
successful in finding the kind of physician they wanted, while others had not been able to find a
female family physician. Two participants were still searching for a female family physician
despite being in Calgary for more than two years; the female family physicians recommended by
their friends were not taking in any new patients. While one participant was able to find a female
family physician after three years, others were still looking:
“I have a number of friends who have this Facebook group… and there are so
many women, Pakistani women over there [on Facebook] who’re constantly
asking for a good family physician which makes me think that to find the right
doctor, if people are actually going to Facebook groups to search for them or ask
for them, then it means there is a shortage of physicians overall over here.”
(Participant 9)
One participant wanted a female physician for their daughter who was going through
puberty, but was unable to find one:
“At that time actually I wasn’t looking for a doctor for myself, but for my
daughter who is going through puberty. So I wanted a female doctor at that time
but she was booked. So we had to go with a male doctor, and the male doctor, he
was like, he wasn’t understanding our issues, so he was quite [participant stopped
here].” (Participant 11)
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In this case, the male physician was not very communicative or forthcoming with
information and advice. The physician also did not encourage the patient to trust him or make
her feel comfortable. Some women had a negative experience when a female physician was
unavailable during their pregnancy care or/and childbirth, despite prior arrangements. For
example, one participant who had a strong preference for a female gynaecologist, ended up with
a bad experience in childbirth:
“For Muslim and South Asian women, I feel that accessibility of female
physicians is a little bit of a problem. When I had my daughter…I wanted
exclusively somebody to deliver my baby who was female. But they were not
providing that; they were trying to make me sign a form that whoever would be on
duty in the hospital, that person would deliver... For that reason, I had to go to a
midwife, and I had a very bad experience of childbirth.” (Participant 4)
Another participant wanted a female gynaecologist, but there were none available where
she lived. She drove 30 minutes to see a female gynaecologist during pregnancy and suffered
pain and difficulties during regular check-ups due to travelling. She was assured that the female
physician would perform her delivery, however, in the end, a male gynaecologist handled her
case. The female physician passed the case on as she was tired and had not slept well for the past
few days. Additionally, the female physician did not apologize, even though she knew that the
patient had only been there in order to see a female physician. Furthermore, one participant was
seen by multiple physicians during labour, despite having a female gynaecologist:
“My most recent experience is just my child birth and I chose not to go back to
that same hospital for my second pregnancy. I had my own gynaecologist, which
was a female. So when I went in, I was assuming that’s who was going to be
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(delivering the baby), and she said they were in a team…so when I talked to my
gynaecologist, that was my concern [preferring a female physician] to her. I
would like to be, when I’m at the hospital, you know, preferably seen by a female
doctor. But…none of that was taken into account at all. And when I was in labour,
I mean, I was just in too much pain…I had multiple doctors just kinda walking in,
and walking out, and I didn’t know who was actually there when they were there,
and nobody really cared to ask what my preference was and what I wanted. So
that was my closest experience to something like that…that I was seen by multiple
male doctors at that point because I was in labour for over twenty-four hours so
they had whoever was on shift kinda came in, and whoever had time came in, and
every time somebody came in, they were talking about the case all over again. I
wasn’t even asked, so if I would’ve been given a preference, I would have wanted
just kinda one doctor coming in. And not everybody just kind of walking in on me.
And, preferably just a female doctor somebody that I felt you know, comfortable
with.” (Participant 12)
4.4.4 Pap test Experiences
From the five participants who previously had been Pap tested, only one declared that she
had a good experience with a physician:
“It was not painful at all.” (Participant 7).
Another participant had a better experience with a midwife compared to a female
gynaecologist as the midwife was more considerate than her female gynaecologist. Additionally,
the midwife convinced her to get Pap tested for the first time, and offered to make special
arrangements for her. However, the participant still had difficulty getting her genitals checked
due to pain and did not get Pap tested. Other participants who had previously had a Pap test
described it as very painful and uncomfortable experience:
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“I avoid Pap tests, because I hate, it is kind of painful and whenever I come back
I get cramping and stuff... why is it painful? Like, there's a clip that they put in,
and it's very painful.” (Participant 2)
One participant mentioned that her low threshold for pain stopped her from getting a Pap
test, but she would get tested if she were unconscious during the procedure. She argued that if
during a dental procedure she could be sedated, then why not for a Pap test. Another participant
asked why an easier alternative method for cervical screening was not available. Other
participants have heard the painful experience of Pap testing from their friends or relatives:
“One of my friends she went to the Pap test, and she said it was very painful. And
after listening to that, oh God, I thought let’s leave it.” (Participant 18).
Communication Regarding Pap Testing and its Significance
Some participants were asked by their physicians to get Pap tested. Others were not
specifically asked about it, but were advised to get a physical examination. In the latter case,
participants did not know whether a Pap test was part of a routine physical examination or never
heard about Pap testing:
“I never heard this thing (Pap test), this term over here in Canada. They never
asked me anything. Even I had my delivery over here, my baby was born here,
nobody asked me about Pap smear.” (Participant 7)
Furthermore, when this participant was asked if she feels concerned about physicians not
asking her about Pap test, she mentioned:
“Yeah, of course they should have asked me. It’s a serious issue, so they should
have asked me.” (Participant 7).
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Some participants were asked by their family physicians (both male and female) to get a
Pap test performed at another location, but would have preferred to get tested in the clinic.
The majority of the physicians who asked women to get tested also described the Pap test
procedure being minimally invasive, with only a little discomfort. One participant mentioned that
her physician described the Pap test as very painful. Physicians told some participants that during
the test, they would be examining the uterus to make sure everything is good and to check for
problems that occur in women. Some physicians did not provide any details about Pap test at all:
“They did not really describe much. She said, ‘Oh when was the last time you had
your Pap test?’ I said I didn’t really. And she’s like, oh okay, well we need to do it
‘cause you’re pregnant, so kinda’…and that was really it. And she just told me
you know, undress and I’ll be right back and that was really about it.”
(Participant 12)
Furthermore, when asked if there was any conversation regarding the details of the
procedure, she stated:
“No, or why exactly it’s happening, or what she’s going to be doing, so no there
wasn’t really.” (Participant 12).
The importance of Pap tests was generally not well communicated by the majority of
physicians. In some cases, the physicians asked women to get Pap tested as it is important, but
did not describe the procedure and the reason for its significance:
“You know, you go, and it’s like okay, this is the gown you’ll be putting on, or you
know, this is how you’ll be sitting on the table. There was a whole lot of that, but
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there wasn’t a lot of exactly why we were doing this. I knew it was for some good
reason, but I didn’t have an exact idea.” (Participant 9)
Participants were asked about seeing or hearing of any measures to encourage Pap testing
and none had seen or heard of any, except for one who had seen some Canadian TV
commercials:
“Not really. Not that I’ve come across. Maybe I don’t go out too much. I mean
I’m thinking I would see something on the train or the bus, or something, right?
Or even at a doctor’s office, but no.” (Participant 9)
However, it should be noted that majority of the participants only watch Pakistani or
Bangladeshi TV and radio channels.
4.5 Barriers to Pap Testing
Barriers to Pap testing for immigrants in general, as well as for Muslims, were divided into
three main categories. These included healthcare providers, the healthcare system and the
personal barriers that participants faced to having Pap tests done.
4.5.1 Healthcare Provider Barriers
4.5.1.1 Lack of Communication
Participants prefer physicians who can communicate well with them, having had negative
experiences with physician who lacked communication (as discussed in sections 4.3.2.3 &
4.4.2.2, respectively). Furthermore, some participants stated that the majority of physicians did
not provide information on healthcare system and services, including the Pap test procedure and
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its significance (see section 4.4.4). Other participants mentioned that many women did not have
a family physician to inform them about Pap testing.
4.5.1.2 Painful/Uncomfortable Pap test
Personal experience of pain and discomfort with Pap testing, or reports of such from
friends or relatives are among the reasons as to why many participants have either avoided or
were unwilling to take the test for the first time or again in the future (as discussed in section
4.4.4).
4.5.2 Healthcare System Barriers
4.5.2.1 Preference & Unavailability of Female Physicians
The first priority for South Asian Muslim Immigrant women is to have a female
physician (as discussed in section 4.3.2.1). This has been the greatest barrier to having a Pap test
done. Pap tests are free, and if female physicians were available, the women interviewed stated
that there were no systemic problems stopping immigrant women being tested. Reasons for
female physician preference included: conservatism of the South Asian community; the feeling
that another woman would be able to understand their problems; and comfort (as discussed in
section 4.3.2.1). Additionally, cultural and religious factors (see section 4.3.3), and the influence
of husband/in-laws (see section 4.5.3.5) also played a major role. Participants would wait until a
female physician became available, especially for their first Pap test, instead of getting it
immediately from any physician. In contrast, one participant would get Pap tested by a male
physician if a female is unavailable as she stated:
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“If no option available then definitely I will go for a male (physician) because that is
important for the sake of my health.” (Participant 15)
Most participants affirmed that they would, ideally, prefer a female family physician who
spoke their language and had the same background. However, they were unable to find this type
of physician and were hesitant to get Pap tested.
4.5.3 Personal Barriers
4.5.3.1 Invasion of Privacy/Shyness
The participants indicated that they did not like to be touched by anyone, especially by an
unknown person (for example, they do not go for massages for this reason). Similarly, they
would not like their genitalia to be examined, even when it is a priority, for health reasons. For
example, one participant said that, during her pregnancy, she had repeatedly refused to let her
private parts be examined, as it made her uncomfortable. Another participant avoided all
physical exams, as she felt that this was not normal for her, to be touched by her physician. Due
to cultural or religious inhibitions, it is often hard for immigrants to have their genitalia
examined by anyone:
“We’re not used to being seen by people, it’s just our…everything that’s private
to us is very private, we’re just too reserved. So that aspect is actually a really,
really huge aspect that I would think…So if they don’t know (Pap test), they’re
not going to make that decision. Aside from that, religiously, I mean that kind of
falls into the same reserved-ness, is I think being reserved is probably one of the
biggest factors.” (Participant 12)
Regardless of the examiner’s gender, shyness remains a factor for some Muslim
immigrant women, and they asserted the same would probably be true for non-Muslim
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immigrants as well. One participant avoided a Pap test due to shyness and an aversion to being
touched by someone she did not know. She felt her privacy and personal space were intruded
upon, and thought that she would find it easier if the test was conducted by using another
method. She gave the example of an ultrasound, where women do not need to take off their
clothes. Participants suggested that explaining the Pap test procedure in detail can overcome
shyness barrier.
4.5.3.2 Lack of Awareness and Significance of Pap test
Lack of awareness about Pap testing and its significance was common among
participants. Participants stated that lack of knowledge is an issue not only for South Asian
Muslim immigrants but also immigrants in general. As one participant stated:
“But the main reason would be like, I didn’t have information and I didn’t have
anybody talking to me about this, or I didn’t see it around.” (Participant 10)
The participants of this study were unaware of health care issues affecting only females
such as breast cancer and were often only aware of health problems that were common in their
families and community:
“Very important to understand the demographics of those immigrants that are
coming here in Canada... women who are coming here they are not so much well
aware of health care issues, particularly health care issues that concern them.
You know, if they do come across some health care issue (feminine) in their lives,
it's almost as a surprise. The only kind of health care issues that they will be
aware of, you know, will be informed of, is if they see that happening in their
families. Like blood pressure, high blood pressure, diabetes, high sugar, or heart
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problems. I'm not sure whether women are more aware of cervical cancer or
osteoporosis.” (Participant 3)
“So many immigrant women are unaware of the importance of getting the testing
done…A woman in her thirties with two little kids might think, oh I don’t need it.”
(Participant 9)
The lack of awareness and practice of Pap testing can be attributed to acculturation.
According to one participant, the majority of South Asians, regardless of their educational or
professional background and fluency in English, will often interact only with others in their own
community. It is even a common question among them as to why they are not more closely
connected to the wider community. One participant mentioned that accepting immigrants into the
Canadian society was also a factor, and hopes that future generations of Pakistani immigrants
will be able to connect with other communities.
The limited contact and associations with other communities could impede adaptation to
the Canadian society of the South Asian Muslim community. According to participants,
immigrants tended to behave in the same way as they did in their home countries. They may
learn how to fulfill their new roles and responsibilities in Canada, but their beliefs and behaviour
would not change:
“They [immigrants] bring them [same behaviour] over here, right? So they
just...they're coming out from their own countries right, so um, a majority of them
uh, they tend to um, behave in the same way they do back home right. They may
become more mobile over here, they may learn how to drive, they'll go and get the
groceries, they'll go and pick up the kids from school, in terms of mobility they
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learn that trait. But it's the same thing, I think their behaviour over there is no
different from their behaviour over here.” (Participant 3)
Additionally, participants still hold to information and beliefs that they learned back in
the countries of origin. Some women stated that they believed that diseases were primarily
attributed to genetics. Thus, if a certain disease was uncommon in their family they would not
consider themselves at risk:
“It’s a personal choice, like I am aware about diabetes, my husband has it, but
still cause my family doesn’t have it, I bother, I don’t bother, right? I feel always
like, okay I’m not gonna have it, so yeah, it’s a personal choice.” (Participant 11)
4.5.3.3 Fatalistic Beliefs
Some participants had fatalist beliefs that their lives were predetermined and if something
was supposed to happen, it will happen, no matter what you do; those with this standpoint,
consequently believe that preventive medicine does not prevent illness. Participants with this
perspective felt that cancer could not be stopped by preventive measures, such as Pap testing, so
having these tests did not made sense to them:
“It's kind of like, as I said, it's very uncomfortable and this is our belief; if
something is going to happen, it's going to happen right? If you're going to die,
you're going to die, so nobody can change the time of death. So getting all these
tests done doesn't make sense to me, like if I'm going to die with cervical cancer,
nobody can stop me from dying. So these tests don't make sense to me, so it's like
kind of insurance. I tell my husband, you don't need it. If something bad is going
to happen, it's going to happen.” (Participant 2).
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4.5.3.4 Prioritizing Family Members over Themselves
Participants mentioned that a large proportion of immigrant population, despite
sometimes being aware of the benefits, would not get Pap tested, as everything else gets
prioritized above them when they come to Canada. In Pakistan, women (especially mothers)
often have the lowest priority, and so they do not give much importance to themselves according
to participants (n=4). Women tended to prioritize their family members over themselves and take
care of everyone else first:
“Now a Muslim woman, you know, all her life, she grows up seeing her mother.
How devoted her mother is right? How her mother places everyone before her. So
everyone comes before the mother...I'm talking particularly in my society, the
society that I've grown up. I've seen my mum, she may have had a bad day, she's
not feeling well, but she'd still go to the kitchen and prepare something right? So
the first thing about Muslim immigrant women, is they need to place themselves
first. They need to, need to you know, know their well-being, and they need to be
trained for that.” (Participant 3)
Immigrant women often work hard to meet their day-to-day living needs, so have little
time to take care of their own personal health. The interviewees said that they were busy with
responsibilities of taking care of their families and children:
“Sometimes, like doing the household thing, some people are studying and doing
the household thing, and raising their kids. After that you don’t have that energy
to take an appointment with a female doctor who’s living like thirty minutes drive
away from your home. So yeah, these things are also [barrier to Pap testing].”
(Participant 17)
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Employed women were less likely to be able to find time for Pap testing. However, one
participant, working full-time, considered getting Pap tested, when she finds some free time in
her busy schedule.
4.5.3.5 Role of Husband & In-laws
Participants believed that husbands and in-laws could influence a woman’s screening
practices. When asked if the husband or in-laws would play a role in getting Pap tested:
“Oh it plays a huge, huge role in her decision.” (Participant 9)
Furthermore, one participant stated that husbands can decide for their wives as to whether
they get Pap tested, especially if the woman was not independent. Men usually open the mail
regardless of the addressee and have more proficient English language skills:
“And invariably is the husband who open up the mail of the house, who is like, oh
well, this came for you and maybe you should go get it done, or maybe you don’t
have to bother.” (Participant 9)
Some participants were dependent upon their spouses for transportation to get Pap tested:
“I am totally dependent on my spouse for each and everything. I don’t know
about routes and hospitals, so I may say like for Pakistani women, as they’re
dependent on their partner. So that is the only barrier that they can’t do anything
on their own. That is the problem.” (Participant 15)
Some husbands were described as “too lazy,” and would never take their wives to the
hospital for a disease she did not actually have. Others would not allow their wives to get Pap
tested, unless it was serious and they actually had a problem:
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“No, no, of course not. Nobody will allowed of course (to get Pap tested). If it’s
like matter of life and death, it’s okay. But otherwise, they will not allow that I’m
sure. But if they’re educated and they know everything, that’s okay. But most of
them are not…Mostly, they say no, it’s not necessary.” (Participant 14)
In contrast, one participant believed that her husband would encourage Pap testing.
Another participant said that family members did not influence Pap testing behaviour:
“Usually women are very independent, even in Muslim community and they make
most of the decisions and when it comes to health. So she’s responsible and she’s
enough, sufficient to make decisions for herself. So I think she is the one who
should be involved or made aware of.” (Participant 10)
4.5.3.6 Language Issues
Language would also be a barrier to Pap testing, if the healthcare provider did not speak
the same language to women with limited English:
“Language, probably, unless if you’re seeing a physician that speaks the same
language as you do. You are not understanding, you are not going to do anything
really. So, language is a huge barrier for a lot of people.” (Participant 12)
When asked about how many women would have language issues, one participant from
Bangladesh noted:
“Fifty percent of them, especially who are newcomers into Canada. Especially
who are coming as spouse, most of them they don’t have you know, good English
background. So it would be a problem.” (Participant 18)
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Language issues affect communication and this result in discomfort for women:
“I think they’re not comfortable with the language, sometimes as well... most of
the people do have an issue with how to communicate their problems with the
doctors. Females are not comfortable discussing each and every problem with the
doctors as well. So that’s another problem with the female immigrants.”
(Participant 8)
In contrast, another participant did not consider language as a barrier to Pap testing:
“You don’t need language to go for a Pap smear test. Language is not as such
involved in this kind of test. You just have to tell them that you’re here for a test,
and if you cannot say that, your husband, your spouse can tell them. So language
is not a very big issue.” (Participant 7)
4.5.3.7 Sexual Partner
Participants with one partner and who believed that females with multiple sexual partners
are the main cause, or are more prone to cervical cancer, would avoid getting Pap tested:
“My belief is if you only had one or two sexual partners, then you are unlikely to
get this cancer, and therefore you don’t have to get yourself checked…So the only
sexual partner I’ve ever had is my husband, so, I am pretty safe…I don’t know if
it’s a correct one, or incorrect one, but my mother obviously knew what she was
saying.” (Participant 9)
4.5.4 No Barriers
Two participants asserted that there were no barriers or lack of facilities to Pap testing in
Canada. When asked about barriers to Pap testing in Muslim immigrant women:
“There shouldn’t be any problem with it [Pap test]. They go for delivery and all
that, of course they can go for Pap smear.” (Participant 7)
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If women wanted to get tested, they could, as it was their choice and depended on how
much knowledge they have:
“If Canadian government are informed us about Pap test, then it’s our
responsibility to do the Pap test for our own health. They have given me their
brochure. It is up to me as to when I have it done.” (Participant 16)
Another participant who had a prior Pap test mentioned that she had a female physician when
she was pregnant and had no issues during the Pap test.
4.6 Strategies for Encouraging Pap Testing
Strategies for overcoming barriers to Pap testing for immigrants in general, and for South
Asian Muslims in particular, could be divided into two categories: healthcare provider and
system strategies to encourage Pap testing.
4.6.1 Healthcare Provider Strategies
Participants recommended that their healthcare providers should inform and encourage
immigrant women to get Pap tested. Physicians should provide details about the importance of
Pap testing and symptoms for cervical abnormalities:
“I think first thing is to tell the physician to talk to ladies and tell them the
importance of Pap smear test, and their consequences and all that. So, this can
make things very easy... doctors can explain to the patient and mostly patients
they really listen seriously to their doctor… it should be mandatory for the
physician to explain this to the patient.” (Participant 7)
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“When an immigrant comes to Canada, and the family gets their first family
doctor, and if that family doctor makes it a part of their initial you know intake to
mention what cervical cancer is, or what breast cancer is, and this is the number
of times that they should be tested after every three years, and it is normal, and
it’s a part of what is expected of them to do, over here. Then it will just make it
easier…Having a family doctor who says you’re getting the test done next month,
and then three years later come back and get it done and the reasons you need to
get it done every three years. Just that conversation is very important, because I
still haven’t had that conversation, and I’ve been in Canada for a long time.”
(Participant 4)
The interviewees felt that social workers could also talk to women about their health and
welfare, educating them to increase their awareness about Pap testing. Two participants noted
that there are a lot of facilities that anyone can utilize in Canada that either did not exist or are
not available to everyone in Pakistan. Most of the immigrant women interviewed did not come
from a privileged background and did not receive proper healthcare services back home, and
stated that they needed information about the resources available in Canada.
4.6.2 Healthcare System Strategies
The last phase of the interview guide asked participants for strategies to overcome the
system and personal barriers faced by them to encourage Pap testing. According to the
participants, the healthcare system was currently not proactive and needed to be, in order to play
an active role in terms of preventive health education for immigrants. Additionally, it would cost
the healthcare system much less in the long run to prevent rather than to treat cancer at a later
stage.
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4.6.2.1 Female and Same Language Physicians
Participants had a strong preference for female physicians, particularly for
gynaecological needs as mentioned in section 4.3.2.1. Participants felt that the Canadian
healthcare system should understand and respect the values of the Muslim immigrant
community, just as immigrants are expected to respect Canadian culture and values. If Muslim
immigrants do not want to see a male physician, then they should be provided with female nurses
or physicians. It is far more preferable for Muslim immigrant women to get a Pap test performed
by a female physician:
“If we increase number of female doctors then definitely Muslim women will go
for Pap test. They will feel comfortable while dealing with females. I must say that
is a hurdle…female doctors.” (Participant 15)
According to majority of the participants, there are no religious or other reasons to stop
women from getting a Pap test, but they do prefer a female physician. Some South Asian women
see male physicians for all their healthcare needs, but, for the majority, a female physician or
nurse, who can conduct a Pap test, should be available:
“I think they would, there’s nothing in their (Muslim immigrant) mind,
religiously or otherwise, except if there is a female physician. Many women also
go to male physicians, in Muslim community and South Asian women, if they’re
fine with it, great, but if you want them to get this done, then you will have to
provide more female, or maybe make more nurses available.” (Participant 4)
One of the best ways to educate immigrant women about Pap testing is to have the
information provided by a person who speaks their language. There is a lack of healthcare
providers who can speak their language, especially for the South Asian community. More female
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South Asian physicians who can speak the immigrant patients’ languages would build trust and
make it easier to communicate with patients. Hence, information should be provided to
immigrant women in their own language and by a female:
“So if it’s made more accessible in the way that they have nurses or family
physicians who give them the information in their language and they have to be
female.” (Participant 10)
Information sessions should be provided to immigrants with difficulties in
communicating effectively in English, i.e. those with language barriers, as they are more likely to
be from backgrounds that could not access proper healthcare resources in their home country:
“Should speak in our language because many of them (immigrant women) don’t speak.
They have come here, but we are all most housewives. We don’t work. I know, forty to
fifty (years old) woman from my community, they don’t work. And they don’t learn
English, they don’t need to because I’ve come from back home in Pakistan, I was
educated, so I can speak. I was from a good school, but at the age of sixteen I was
married. So many of them are the same, with the same matter. So they don’t speak. They
need Urdu and of course Punjabi and everything, so they can communicate and
understand. (Participant 14).
Additionally, having a female chaperone during a Pap test, especially for the first time,
was suggested by participants:
“If they’re not comfortable for the first time, one should offer that I’ll go with you
for the Pap test if you’re very uncomfortable.” (Participant 8).
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4.6.2.2 Women-only centres for conducting Pap test/physical exams
Many participants suggested having a women-only centre for Pap testing, and all other
gynecological related issues. One participant mentioned that not only Muslims, but other women
with different ethnic and religious backgrounds, would prefer the same. In addition, a separate
physician in this centre for conducting the Pap test would also facilitate the screening process:
“Finding just your own family physician that meets your needs is so difficult for a
lot of women – immigrant women. Perhaps just having a centre for, you know
how they have centres for newcomers and things like that? So maybe something
like that where you have just one or two doctors sitting there that are you now,
maybe from one or two different cultures, female doctors, and where women can
go in and ask question, information or if they need to have a Pap test, then. So
even if you’re seeing a doctor from a different culture, or you’re seeing a male
doctor, but then you know about the centre, you’re like, ‘okay yeah, I don’t wanna
have it with you, but I can go here and…’ do something like that. I mean I don’t
know if they have something as such set up, I have no idea.” (Participant 12)
Additionally, when asked if the majority of the Muslim community will go to these centres:
“Yeah, yeah of course we will. Not me only. Seventy percent of the Muslims, they
will go, I am sure. For not the Muslims, everyone will go. The ladies, from the
Indians, from the everywhere, they will go there for the lady center… Not I’m
asking too big center, three, four centers, but there should be one center. So it’s
mid in that North East go there, South East go there, that’s not matter, we will go.
We will take risk to go for half an hour. But there should be, a Muslim center.”
(Participant 14)
“There should be a center for everything. Not just Pap test, for ultrasound and xrays and many things…even for the blood test. If I have to do the check-up and
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take off my scarf or something, so I don’t like. So if there is a center, I can openly
sit.” (Participant 14)
Participants noted that it could be embarrassing to later face the physician who has
examined their private parts, so it would be easier if there was a separate physician for Pap tests
only, who they did not see after the test. One participant also suggested that it would be easier if
there were no conversation or eye contact with the physician during the Pap test and, thus, the
physician would not need to speak their language.
4.6.2.3 Education and Knowledge of Healthcare System: Cervical Cancer and Screening
Participants noted that newcomers to Canada found the healthcare system complicated
and hard to understand. They were not well informed by immigrant services, which was their
first point of contact upon arrival in Canada. One participant stated that they were made aware of
the free healthcare and of the procedure to obtain a health card. However, other participants said
that they were unaware of services/procedures available in Canada, especially those that were
different or not commonly available in their home country, such as having a family physician,
having annual exams etc.
One interesting suggestion to increase cervical cancer awareness was:
“You know for breast cancer there’s a pink ribbon, so you know there’s a sign,
people are curious about it, what does the ribbon means and stuff like that. When
you see, it has to be something visual like cervical cancer…if we can you know
produce any ribbon or any sign that shows that represents cervical cancer, I
believe people will eager to know. And the colour, you know I find, like lot of
people knows pink is the colour for the breast cancer…oh that’s breast cancer. I
don’t know, it’s not happening to cervical cancer.” (Participant 18)
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There was no widespread awareness about Pap testing among the interviewed women, so
measures should be taken to increase their knowledge and awareness about it. Additionally, the
women needed to be informed about the significance and importance of Pap tests, and how a
lack of testing, or a long interval between tests, could affect their health:
“When I initially came to Canada, I had no idea that I needed to be tested, or I
should be tested. And until I received that piece of paper and even then I didn’t
know what the exam would be like. So just providing your patient with that
knowledge; okay, this is what it is, and this is why you need to get it done. Even
with a mammogram or anything like that, I sometimes think that people of my
cultural background, especially women, don’t have that knowledge, as to why do
we need to get that mammogram, or how do we need to take care of ourselves in
order to keep fit…I guess it’s just providing your patient with the knowledge, and
that this is what you’ll be going through, and it’s okay and just taking your
patient step by step.” (Participant 9)
Other ideas to be included while informing women about Pap testing:
“Who make it friendly in the sense that, this is something that you need to do, just
give them the health point of view, rather than, give them the clinical side of
things and how healthy they will be, and that they need to get it done. But at the
same time not really mention the religious or the culture points which are taboo.”
(Participant 9)
Additionally, family should be involved in Pap testing awareness measures, as they can
play a role in their general healthcare and screening practices. Some participants suggested that
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involving family members by educating them about Pap testing and its importance, could
increase screening practices:
“The best way to blackmail Muslim women is through their kids. Like, you have to
be there for your kids, so please get these tests done, otherwise…for your kids you
are much more important, your kids need you, so I think they would get it.”
(Participant 8)
Additionally, husbands and in-laws need to understand the Pap testing procedure and its
importance as they influence a woman’s decision. One participant considered family awareness
about Pap testing more important than the women herself:
“You should not talk to the lady, but with the family. Because it matters of course
of husband. He has to be ready for this thing not the woman.” (Participant 14)
“Majority of the women are dependent on the decision of their husband, so first,
we should I think people who are working on this area, they should target the
male of the family, male member of the family. Because if they get educated, it
will be easy for the woman to come and get the Pap test.” (Participant 17)
Many participants stated that Muslim women often rely on family members for
transportation and to assist them in communicating with others in the English language. Even
educated women were unaware of Pap testing, since preventative measures were generally not
present in their home country. Awareness should be targeted at the community level. There
should be mandatory sessions for immigrants to learn about healthcare, including Pap testing,
within a friendly environment. Another way is to involve community members who participate
in or host the various social events and religious events. These members could be educated first,
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and can then transmit this information to others in the community. If the importance of Pap
testing was properly communicated and immigrants were convinced it is for their own health,
they would get tested. These sessions can be held at religious and community centres at multiple
locations, especially during major Muslim events such as Ramadan:
“Information sessions maybe? and like I said, if you know the importance of
something, if you now that having something prevents you from losing something
right. So I think a lot of people would want to do it. So if you are more informed
and more knowledgeable about the reasons why it’s important to do it and so on,
I think a lot more women would do it. So to me it’s just maybe information
sessions targeting the actual community.” (Participant 12)
Participates mentioned that immigrants should learn about tolerance and respect for
others’ beliefs, and that their own beliefs are treated in the same respectful way. As a citizen,
they need to know that existing Canadian values must be respected, and likewise, the values of
immigrants should be respected and that nothing should be forced upon them.
Participants suggested more advertisement about cervical cancer in public locations. One
participant suggested having talk shows on radio in their own language, to spread awareness of
Pap testing. One participant also suggested that, like for breast cancer, there should be a cervical
cancer awareness day and to also use Facebook and twitter to raise awareness about cervical
cancer.
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4.6.2.4 Services and Resources
Transportation to Pap Testing Centers
Transportation should be provided to women who are unable to get to the testing centre
for Pap testing. As noted in section 4.5.3.5, women often do not know how to drive and rely on
their husbands and/or family members for transportation.
“Lot of women are not driving and they totally dependent on city transport. Some
women stays at home and they don’t take even the monthly bus [pass], so it’s a
big issue for them.” (Participant 18)
Monitoring Immigrants for Pap Testing
Participants mentioned that no checking system was available to monitor the Pap test
history of immigrant women:
“There’s no sort of, the doctor, nobody’s checking you. Okay, so you came in
country this, did you get it checked, and did you get it checked again after three
years?” (Participant 4)
Some participants suggested setting up a checking system that specifically targeted the
immigrant population in Canada. Newly arrived immigrants should be added to this system and
proper resources should be allocated to check their Pap testing record:
“When immigrants come in there should be a person appointed, the government
agency appointed, that person would, from the government of Alberta, should visit
them and tell them that now you moved to Canada, welcome to Canada, and this
is what you need, she should do and this is what you need too…it’s not just the
Pap thing, then there should be information which is going to their home because
lot of people can’t even, don’t have the computers when they move in. So they
can’t google everything. Don’t most of the people I think at the age of fifty are
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moving in, they don’t even have the information, they’re not much more
comfortable with the computers. So I think communication from the government
then comes, it’s more of an importance rather than doctors because if I would
have come here, and if I don’t have any problem, then I would not go to doctor, I
don’t know whether Pap test is important for me right now or not. Until and
unless I go and visit doctor and he asks me, I would not know.” (Participant 8)
Another participant stated newly immigrated women should be obliged to get tested:
“I think a new immigrant should be bound to take this (Pap) test within first three
months. Otherwise, like I am lazy, I know the importance of test, but I’m delaying
it that I will do it tomorrow, or…Like it should be related to social insurance
number that you will be given and providing report of Pap test.” (Participant 15)
Participants attested that using this strategy would serve as a reminder and would
motivate immigrant women to get Pap tested.
Pap test Reminder & Brochure
Several participants mentioned their views regarding the Pap test reminders from Alberta
Health Services (AHS). Women misinterpreted the reminder letter for Pap test screening as a
notification that they had cancer! A physician from Pakistan working in the community was
called about the meaning of the notification letter:
“Some of my friends got the letters too, but then that's scary for them, because
they think if you get a letter, are you getting cancer? That's why they sent you a
letter? So then I had to tell her that okay, that's not the case.” (Participant 1)
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For other participants who lacked knowledge about cervical cancer and Pap testing, the
reminder letter and brochure for Pap testing were not helpful. According to some participants,
the letter told them to get Pap tested but did not inform how to do it. Hence, some participants
did not understand how to get Pap tested, even after receiving the reminder letter. The brochure
did not provide information about cervical cancer itself and how Pap testing can prevent it. It
assumed the reader had prior knowledge:
“I have very little knowledge…I received that first, initial letter in which it stated
that I should go get a Pap test. I think I was given a brochure to read or
something. But the brochure didn’t contain information…it contained a bit of
information about the test, but it didn’t contain information about the cancer. It
doesn’t explain how Pap test prevents cancer and it didn’t really explain
what…so it had the information that had assumed that I had the knowledge
beforehand. Which I clearly didn’t, and I still don’t.” (Participant 9)
She also mentioned that sending Pap test reminders in English was also a problem:
“Instead of just sending out a letter, which is in English, and so many immigrant
women don’t have the necessary language skills to fully understand what they’re
reading, or comprehend what they are reading.” (Participant 8)
Participants suggested that information about Pap testing should be in available in their
own language(s) and provide details about the procedure and how it prevent cervical cancer.
Information should aim to target those with no prior knowledge about these topics. Positive reallife experiences should be used to inform immigrant women, as many have heard of, or have had
in the past, painful Pap test experiences. Instead of relying on written instructions only, visual
resources should be used, such as pictures of the female anatomy, what happens when something
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goes wrong and preventative measures. In contrast, one participant was satisfied with the
information presented in the AHS reminder letter for Pap testing:
“Yes, [the letter] explained each and everything and from that letter I came to
know that there is a type of cancer which can be cured. I am satisfied because I
came to know about each and everything related to the cancer and screening.”
(Participant 15)
4.7 Summary Tables
The main study findings mentioned in this chapter, together with their associated themes
and subthemes are summarized in table 4.2. The similar findings across different themes are
shown in table 4.3 and illustrates findings that were present in more than one theme.
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Table 4.2: Summary of the Major Findings
Theme
Sub-themes
Knowledge about
cervical cancer &
screening
Attitude,
Knowledge,
Beliefs &
Practices
Experience with
Healthcare
System &
Services
Findings
-limited or no knowledge about cervical cancer &
screening
-misunderstood Pap test procedure, risk factors &
population at risk
Preferences for physician -female physician, same language, knowledgeable,
good communicator, understanding, provider of
characteristics
information, give time and & attention
-inappropriate to get genitalia or pelvic organs
Cultural, & religious
checked, especially before marriage
-women were primarily responsible for the family
norms
-peer pressure to have a female physician
-religion prioritized health & encouraged Pap test
-screening was important even among women
Views about healthcare
who had never had a Pap test
-willing to get Pap tested, if information was
screening
provided
-received treatment, regardless of preferences for
Healthcare seeking
physician gender
-preventive measures were not commonly
practices
practiced & considered a waste of time
-in Pakistan & Bangladesh, quality of care was
dependent on the patient’s financial status & Pap
Comparison among
tests were expensive.
-female physicians were readily available in
healthcare systems
Pakistan & Bangladesh
-physicians in countries of origin were unaware
about Pap testing
-negative experiences in Canada: lack of
Experience with
communication, preferences not asked/discussed,
healthcare providers
one health problem per appointment, limited or
lack of skills
Experiences with
-negative experiences in Canada: long waiting
times, unavailability of female physicians
healthcare system
Pap test experience
-physicians did not describe Pap testing & its
importance
-Almost no one has seen or heard any measures to
encourage Pap testing
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Theme
Sub-themes
Healthcare provider
Barriers to Pap
Healthcare system
Testing
Personal barriers
Healthcare provider
strategies
Strategies to
Encourage Pap
Testing
Healthcare system
strategies
Findings
-lack of communication
-past painful/uncomfortable Pap test
-Preference & unavailability of female physicians
-fatalist beliefs that preventive measures did not
prevent disease, lack of awareness, one sexual
partner, dependence on husbands or in-laws,
shyness (uncomfortable being touched by
anyone), language issues, prioritized family over
themselves
-awareness and encouragement by family
physicians & social workers
-explain why Pap test is important
- provide female & same language physicians
-educate about healthcare system, cervical cancer
& screening
-separate centers for Pap testing
-provide transportation, monitoring system for
immigrants
-Pap test reminders in their language that explain
the process in detail & how it prevents cervical
cancer.
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Table 4.3: Similar findings across different themes
Theme
Attitudes,
Knowledge,
Beliefs &
Practices
Experience
with
Healthcare
System &
Services
Barriers to
Pap Testing
Strategies to
Encourage
Pap Testing
Female
physician
Lack of
knowledge
of cervical
cancer &
screening
*
*
*
Findings
Communication Dependence
by Physicians
on
husbands/
in-laws
*
*
*
Language
issues
*
*
*
*
*
*
*
*
*
*
*
*
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Long
waiting
times
*
*
Discussion and Conclusion
5.1 Introduction
In Canada, cervical cancer screening rates of women with Asian background remain low,
compared to Canada-born women, regardless of the duration of their residency in Canada and
whether they arrived in Canada as adults or children or if they are second generation Canadians
(27). Of all the immigrant groups in Canada, South Asian immigrants have been identified as
having the lowest screening rates (23, 29). These immigrants come from counties with either a
Muslim majority or a large proportion.
The research objective of this study was to identify barriers faced by the South Asian
Muslim immigrant population to cervical cancer screening. Previous studies have examined such
barriers to screening in relation to other ethnicities, such as Vietnamese, Hispanic, Korean and
Chinese etc. (35, 36, 70, 71). As participant selection in these previous studies was based just on
ethnicity, with religion not being identified, the representation of Muslims in such studies is
unclear.
My review revealed a lack of information on the potential barriers to cervical cancer
screening of South Asian Muslim immigrant women in Canada. Since so little has been
previously identified, it was appropriate to perform an exploratory qualitative study to address
and answer the following research questions:
1. What factors influence South Asian Muslim immigrant women’s views on, and practices
towards, cervical cancer and screening?
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2. What are the barriers to cervical screening faced by South Asian Muslim immigrants and,
in response to these, what strategies were suggested by participants to encourage cervical
screening in South Asian Muslim immigrants?
In-depth interviews with South Asian Muslims immigrants allowed for the consideration
of both ethnic and religious factors as influences on screening practices. The interviews focused
on perceived barriers to cervical screening, and also attempted to gain insight into the attitudes,
beliefs, current healthcare practices and experiences of the participants, which were seen as the
underlying reasons or influences to their willingness to undergo a cervical screening procedure.
Strategies suggested by participants to overcome barriers to cervical screening were also studied.
The study findings were categorized into four major themes: 1) Attitudes, knowledge,
beliefs and practices; 2) Experience with healthcare system and services; 3) Barriers to Pap
testing; and 4) Strategies to encourage Pap testing.
This chapter discusses the results of the study and links them with current literature that
supports or contradicts the information gathered. The limitations of the study, and some ideas for
future research, are also presented. The chapter concludes with recommendations to improve
access and to encourage cervical screening among South Asian Muslim community, and for
immigrants in general.
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Lack of
Knowledge
Experience
with
Healthcare
System &
Services
South Asian
Muslim
Immigrant
Women
Personal
Views &
Beliefs
Healthcare
Seeking
Practices
Cultural &
Religious
Norms
Figure 5.1 Factors influencing South Asian Muslim immigrant women’s views and
practices towards cervical cancer and screening
During my engagement with the study participants, in answer to my first research
question, key factors were identified pertaining to South Asian Muslim immigrant women’s
views and practices regarding cervical cancer screening. Figure 5.1 illustrates these key factors.
5.2.1 Lack of Knowledge
The South Asian Muslim women interviewed in this study lacked knowledge about what
cervical cancer is, what the risk factors are, and whether it is preventable. Participants were even
unaware of the term ‘cervix’ and of basic female anatomy. This emphasizes the need for specific
educational programs that include information on female physiology for South Asian Muslim
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populations. Furthermore, participants were also unaware of the current guidelines for Pap
testing in Canada, in particular who are advised to undergo screening (sexually active women,
though not during menstruation). Lack of knowledge about cervical cancer and the purpose of
the Pap test within this South Asian Muslim immigrant community, is a barrier to cervical
screening. This was corroborated in a survey on South Asian women in Toronto, which found
strong correlation (p<0.001) between lack of knowledge about Pap tests and a low prevalence of
cervical screening (31). In Pakistan, lack of knowledge was reported as the most common reason
for not getting Pap tested (46). However, not all research supports these findings of knowledge
and beliefs being the main influence of cervical cancer screening practices. Menon, Szalacha and
Prabhughate (6) surveyed South Asian women in Chicago, found only 32.8% had ever been
screened, but their knowledge and beliefs were not related to ever being screened.
Lack of knowledge also causes misinterpretation and misunderstanding regarding
cervical cancer and Pap testing. Participants considered Pap testing reminders as a notification of
having cervical cancer, making them even more reluctant to get Pap tested, as they feared it
would show that they already had the disease. In a survey of Nigerian women, fear of cancer
being detected was one of the reasons for not practicing cervical screening (72).
In this study, many participants believed that cervical cancer only occurs in older women
so a Pap test is not required until later in life (after forty) and is inappropriate at an early age.
Age was found to be a factor for Pap test attendance by women in Malaysia (57, 73), and among
South Asians in United States (47). Participants in a survey in Malaysia (57) agreed that only
women above 40 years of age needed to be Pap tested. This was particularly found among
Malaysian women living in rural areas, and the majority of these women (>80%) were Muslims.
99
Women aged 40-49 years old were found to be significantly more likely (OR=3.027) to get
cervical screening, compared to women aged 20-29 (56).
Some interviewed women believed that poor hygienic practices, including the use of
public washrooms, could cause cervical cancer. This belief was also reported in a policy brief
(74), which examined the barriers to preventive care that foreign-born women face regarding
cervical cancer, in United States (specifically South Asian and Vietnamese women) (74).
In this study, participants knew that multiple sexual partners was a risk factor for cervical
cancer, as they were warned by their mother or others seniors in their community. Similarly,
among Malaysian females, the highest knowledge about cervical cancer risk factors was having
more than one sexual partner, and the lowest was the relationship between HPV and cervical
cancer (75). This shows that knowledge about risk factors for cervical cancer among Muslims is
similar in other Asian countries, as the information passed on by family and friends is usually
only about sexual partners.
5.2.2 Personal Views and Beliefs
The uptake and compliance of Pap testing in South Asian Muslim immigrant women is
influenced by their own attitudes and beliefs. Participants mostly believed that seeking
healthcare in the absence of symptoms was not necessary. Such perception that Pap testing is
unnecessary was also reported in other studies with South Asian immigrants (31, 59). This is
common in developing countries as a cultural norm where healthcare is limited and expensive so
medical care is utilized only for treatment.
The fatalist belief (that events are fixed in advance and people are powerless to change
them) was mentioned by some participants (n=3); this was echoed in other studies among Latino
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immigrants (76, 77). In my findings, participants with fatalist beliefs were highly educated and
believed strongly that preventive measures were not helpful. Other participants (n=8) viewed
cervical screening, and other screening tools, as highly important and believed that every woman
should get screened. Such views were expressed even by women who had never been screened.
These opposing views among participants, who advocated cancer screening for others but
thought it unnecessary for themselves, were related to either denial (believing that it would never
happen to them) or fatalism (if it did, then nothing could be done to stop it).
Other participants, who never had a Pap test, were willing to get tested if sufficient
information was provided about Pap testing. Similarly, in Pakistan, when asked about their views
of cervical screening, the majority of women (85%) agreed that early detection of cancer
improves the survival rate (46).
Modesty and shyness can also hinder cervical screening among Muslim women, since
they are reluctant to compromise their privacy and personal space. Participants also mentioned
that Pap testing is a private topic and they do not discuss it with family members and in their
social circles. Similar results were seen among Sikh women living in Calgary, where women,
regardless of their age and length of residence in Canada, agreed that Pap testing is a private
matter, not discussed with others. (59). However, providing a female physician, and explaining
the Pap test procedure in detail before starting the test, can reduce their anxiety and help
overcome this issue.
5.2.3 Cultural and Religious Norms
The religion of Islam prioritizes health and well-being of an individual. The majority of
the participants in this current study believed that Islam would encourage Pap testing, rather than
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discouraging it or playing a neutral role. This contradicts previous research that religious beliefs
could prevent screening, especially of the reproductive organs such as the cervix. Furthermore,
religion was not correlated to health behaviour among South Asian, Middle Eastern and Muslim
women in United States (78, 79).
Marital status was found to be a predictor of cervical cancer screening among South
Asian, Latina, Chinese, Korean and Vietnamese populations (35, 40, 56, 80, 81); married women
are more likely to get Pap tested. Marriage is particularly important among the Muslim
community, as sexual intercourse is forbidden before marriage in Islam. As such, only following
marriage does sexual activity usually begin, and, therefore, so too does the potential need for
obstetric care (38). This explains why participants were taught, at an early age, not to get their
sexual and reproductive organs checked before marriage.
The majority of participants of this study would consult their husbands before seeking
treatment in an emergency situation, and ask their permission before seeing a male physician.
Similarly, a majority of Malaysian women (60%) reported that they would approach their
husband first, if they experienced symptoms of cervical cancer, needing their moral support (56).
These findings relate to gender roles in South Asian Muslim community, where males are
usually dominant in society. This is not only due to the religious beliefs of Muslims and
restricted to this community, but rather a cultural norm that can be found in South Asian
countries. Sikh women living in Canada also said that they have a male-dominated society and
that they had to get permission for medical appointments from their husbands, another male
family member or from their mother-in-law (59).
Many of the interviewed South Asian Muslim immigrant women were dependent on their
husbands and in-laws for transportation for an appointment with a physician, or for assistance for
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interpretation. Participants in this study mostly reported a negative influence towards cervical
screening or lack of support from their husbands and/or in-laws. Similarly, Nigerian women
stated that the absence of a supportive male partner can be a barrier to cervical cancer screening
(82), while receiving social support from their husbands can be a facilitator to screening (82).
South Asian Muslim immigrant women are encouraged to ensure the wellbeing of their
husbands, in-laws and children first, as well as their other responsibilities, as was found in Sikh
women living in Canada (59). These responsibilities for the family result in lack of time
dedicated to their own healthcare needs, especially the practice of preventive measures without
any symptoms.
This habit of South Asian Muslim immigrant women putting themselves at the bottom of
their list of priorities emphasizes the significance and impact of culture and family on them,
particularly the influence of husbands on their healthcare seeking behaviour. This also highlights
the necessity to educate and involve the family and to address cultural considerations, to increase
screening practices in this group.
5.2.4 Healthcare Seeking Practices
South Asian immigrants’ underutilization of preventive measures and their practice of
seeking medical care only for serious health issues, are likely due to their experiences and
utilization of the healthcare system in their native country. Similar findings were also reported by
Oelke and Vollman (2007) among Sikh women in Calgary that immigrated from India (59).
Although the majority of the women interviewed in the study were highly educated (with
graduate or professional degrees), most of these women still had never had a Pap test, and were
less willing to get tested in the future (either due to their beliefs, such as fatalism, or because they
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considered it unnecessary, in the absence of any symptoms). In contrast, women with a low-level
of education were more willing to get Pap tested, if information was provided to them. These
women also asked their physicians about the test and were more proactive towards screening.
Previous literature found the opposite, suggesting that women with a low-level of education are
less likely to be screened (83). While Ice (2007) did not find education to be a factor to getting
Pap tested for Thai immigrant women living in Germany (84), this study’s findings showed that
education was a factor for South Asian Muslim immigrant women willingness to get Pap tested.
More research is clearly needed, however, to understand the role of education in cervical
screening practices in this group, as this barrier was not the only influential factor in these
instances.
Another factor for women in Pakistan and Bangladesh to get Pap tested or not, could be
their socio-economic status, as diagnostic and screening services are costly or unavailable in
these countries. In this study, women who had been Pap tested had a high socio-economic status.
Moreover, participants who had family in the healthcare profession in Pakistan and Bangladesh
were more aware of screening than those without such connections.
These findings highlight the role that socio-economic status has on screening practices in
South Asian countries, where expensive and uncommon preventive measures are only accessible,
or known, to upper-class families. Level of education could further confound socio-economic
status and affect women’s awareness and practice of cervical screening, both in their native
country and after immigrating to Canada.
Length of stay in Canada was not related to awareness or practice of cervical screening in
participants of this current study. However, the sample size is small and not representative of the
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community. Other studies found new immigrants are less likely to be Pap tested than those who
have been resident in Canada for ten or more years (2).
5.2.5 Experience with the Healthcare System and Services
Positive experiences with the healthcare system can enable women to be more
comfortable with the idea and practice of being Pap tested, hence facilitating screening (85).
Conversely, negative attitudes of medical staff members can be a barrier to screening, as these
may cause the woman to be more anxious about being tested (60).
The perception and experience of Canada’s healthcare system and services in South
Asian women, can stem from the healthcare facilities that they were accustomed to in Pakistan or
Bangladesh. The interviewees who had private healthcare in Pakistan or Bangladesh, had
negative experiences with the Canadian state-run public healthcare system, as their expectations
were higher than the Canadian system could meet. This was partially due to long waiting times
(private healthcare providers were readily available without any waiting times, in their native
countries). Also, in Pakistan or Bangladesh no referrals are required in the private healthcare
system, to see any healthcare provider (including specialists). Furthermore, these physicians
would likely spend more time with their patients than those working in a free, federally-funded
clinic. In these instances, comparing Canada’s free public healthcare to expensive private
healthcare in a developing country is unrealistic and inequitable. Private healthcare in developing
countries is only affordable by wealthy individuals, who make up a small proportion of the
country’s population. The majority of population in Pakistan and Bangladesh resides in rural
areas, where education and healthcare services range from limited to non-existent. Moreover, the
inequality of wealth and resources, allows only the middle and upper socio-economic classes
105
(who generally have private health care in their country of origin) to immigrate to a developed
country. Thus, when the medical care of immigrants’ (with high expectations) changes from
private to public, their experiences are negative.
Participants of this current study reported concern with physicians in general (regardless
of their background), with respect to waiting times and being rushed during appointments.
Additionally, physicians from other than participants’ own background were perceived as
lacking in knowledge and concern for their patients, which could have been a consequence of
poor/lack of communication. However, other researchers’ findings contradict this, for example,
Sikh women living in Canada expressed concern about medical care they received from their
own Indian physician (59). In another study, having a Vietnamese doctor was negatively
associated with getting Pap tested in the Vietnamese population (36). Interviewees were also
concerned about family physicians who would either not communicate that they knew them, or
did not remember their details from prior consultations. This concern could be attributable to
their expectations from physicians in Canada, compared to their prior experiences in their native
countries, where people in South Asian communities have a personal connection with their
family physicians; patients have their physician’s personal contact information and they are often
invited to join the family on special occasions.
Physicians in Pakistan and Bangladesh usually spend more time with their patients than
Canadian physicians do, and consult on multiple health concerns during a single appointment
regardless of their association with private or public healthcare systems. This emphasizes the
need for improvements in physician-patient interactions with the South Asian Muslim
community, to avoid negative experiences with the healthcare system, and healthcare providers
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in Canada. This will, potentially, result in increased uptake of cervical screening by women from
this group.
5.2 Barriers to cervical cancer screening faced by South Asian Muslim immigrants and
strategies suggested by participants to encourage screening
Understanding South Asian Muslim immigrant women’s perspectives and views provide
us with information about the factors that influence their their decision to get cervical screening,
and the barriers which prevent them being screened. The remainder of this chapter will focus on
the barriers to cervical screening faced by South Asian Muslim immigrants and, in response to
these, what strategies were suggested by participants to encourage screening in the South Asian
Muslim community. The barriers are divided in three categories: i) healthcare provider barriers;
ii) healthcare system barriers; and iii) personal barriers.
5.2.1 Healthcare Provider Barriers
Healthcare provider issues can create challenges for cervical cancer screening among
South Asian Muslim immigrant women.
Lack of Communication by Physicians
Participants reported a lack of communication by the Canadian healthcare providers; the
majority of physicians did not provide information on the healthcare system and services
(including the Pap test procedure and its significance). Lack of recommendations from
physicians to get Pap tested can be a barrier, and cause reluctance among women to attend
107
regular cervical screening. Participants in this study reported that physicians in Pakistan and
Bangladesh were unaware of, or did not recommend Pap testing. A similar finding was also
reported by 95% of the survey respondents (n=192), through convenience sampling in Pakistan
(46). Furthermore, without serious symptoms women in Pakistan and Bangladesh would not get
Pap tested in their native country and would likely continue the same behaviour after
immigrating to another country (86). In another Muslim-majority country, Malaysia, poor uptake
of Pap smear screening among schoolteachers was associated with insufficient information
provided by healthcare providers (57).
In this study, some participants reported that they knew about Pap tests only because they
delivered their children in Canada. Similarly, other researchers noted that being pregnant was a
reason that women became aware of Pap testing. this explains why never having children can be
a barrier to cervical screening (56, 87).
Painful/Uncomfortable Pap tests
Personal experience of pain and discomfort during Pap testing, or reports of such from
friends or relatives, are among the reasons why women avoided being tested, or were unwilling
to take the test for the first time. The majority of participants of this study who had a Pap test
(four out of five) reported a painful Pap test experience. Concerns of pain and discomfort were
also reported among women living in Pakistan, where 54% of the women involved believed it
would be uncomfortable to be Pap tested (46). Similarly, other studies have shown that the
perception of Pap tests being very painful reduces the likelihood of black, Latina and Arab
women in the United States, to schedule their first Pap test (88).
108
Some interviewees in my study asked why Pap testing is painful or if there were
alternative methods that were less painful for cervical screening. These concerns were also
shared by women living in Qatar, who stated that they were willing to get Pap tested if they were
assured a pain-free procedure (52). Future research should investigate why women from various
ethnic backgrounds perceive Pap test being painful and what measures should be taken to
overcome this issue.
5.2.2 Healthcare System Barriers
Unavailability of a Female Physician
Some participants were unable to find, or had a hard time getting, a family physician in
Canada. In the Sikh community of Calgary women were also concerned about this, especially as
their preference was for a physician from their own community (59).
In general, an individual is less likely to trust or seek advice from their physician if their
preferences were not respected. In my findings, preference for female physician was strong, in
particular for sexual and reproductive examination reasons. Several participants shared their
negative experiences with healthcare providers and system. These negative experiences revolve
around female physicians, in particular the unavailability of gynecologists, as was found with
other South Asians in Calgary, Canada (59). The majority of the participants in the current study
agreed to see a male physician in an emergency, for example during childbirth. However, to get
Pap tested, which is a woman’s own decision as to when and where it occurs, a woman may
decide not to be screened if the preferred physician is unavailable.
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Religion was not the sole reason for a female physician preference, as some participants
preferred them for comfort and better understanding, due to physiological similarities. Similar
findings were reported by Oelke and Vollman (2007) for Sikh women living in Canada (59).
Preference for a female physician by women can be influenced by their husbands or
through peer pressure, regardless of their own preference. participants with no gender preference
for physicians still suggested that having a female physician would encourage Pap testing among
other immigrants. Also, some participants felt they would be judged for seeing a male physician
for gynecological issues. However, from a study in Malaysia with a sample size of 959 women
(780 of which were Muslims), it was reported that 50.6% of the respondents were comfortable
with a male physician performing a Pap test (56). Participants mentioned that the availability of a
female physician is an issue in Canada, but not in their home countries as almost all
gynecologists in Pakistan and Bangladesh are female.
First Language Physician
The availability of preferred physicians in Canada becomes more challenging, when the
female physician is also desired to have a similar cultural background to her patients (being a
South Asian and/or Muslim) and has the ability to speak the same language as them. Language
was found to be a barrier for cervical screening among many ethnicities, such as Korean,
Chinese, Hispanic and Cambodian women (35, 89, 90).
Preference for physicians who speak the same language as their patients was different
from those who desired good communication skills from their physicians. At times, due to the
similarity of these two requirements, they may not be clearly distinguishable as two separate
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preferences, with regard to communication. Some participants desired good communication
skills in physicians by being good listeners and being able to convey information in a way that
was understandable. This preference is related to the skills of the healthcare provider, whereas
women who wanted a physician with the same language and cultural background as them was
due to difficulty with English. These women are unable to explain themselves in English and felt
that they would be better understood, linguistically, culturally and emotionally, by a physician
who shared the same cultural background and spoke the same language. It should be noted, that
physicians with great communication skills would still be unable to deliver good care due to
perceived language barriers.
5.2.3 Personal Barriers
Views and Beliefs
South Asian Muslim immigrant women views and beliefs (discussed in section 5.2.2) can
be barriers to cervical cancer screening. In this current study, these included the belief that
seeking healthcare in the absence of symptoms was unnecessary, fatalist beliefs that preventive
measures were unable to prevent things that were meant to be, and modesty and shyness.
Lack of Awareness
Lack of knowledge about cervical cancer (see section 5.2.1) and awareness of Pap testing
can be major barriers to screening among South Asian Muslim immigrant women. Such factors
can be attributed to a lack of acculturation of the women (and men) in this group: many South
Asians, regardless of their educational or professional background and fluency in English, often
111
interact only with others from their own community. The limited contact and association with
other communities could impede adaptation of the South Asian Muslim community to Canadian
society.
Role of Family
The role and expectations of families towards South Asian Muslim immigrant women,
and vice versa, can cause barriers to cervical screening. As discussed in section 5.2.3, South
Asian Muslim immigrant women tend to prioritize their family over themselves, and lack time
for their own healthcare needs (especially regarding the practice of preventive measures when no
symptoms are apparent). Additionally, these women are dependent on their husbands and in-laws
for transportation for an appointment with a physician, and/or for assistance with language
interpretation.
Language Issue
South Asian immigrants, and immigrants in general, face difficulties to cervical
screening, due to the inability, or limited capacity, to communicate with healthcare providers in
English. Language has been being reported as a barrier, or significantly associated with low
cervical screening rates in various ethnicities, including Korean, Hispanic, Chinese, Cambodian
and Vietnamese women (35, 91, 92).
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5.3 Strategies suggested by the participants to overcome barriers to cervical cancer
screening
Exploring strategies to overcoming barriers to Pap testing in the South Asian community
from their perspective, is crucial to increase the rate of screening in this group. The strategies
suggested by interviewees inform what the needs of this community are and what strategies and
resources they desire to effectively change their screening behaviour. The strategies can be
divided in two categories: i) healthcare provider strategies; and ii) healthcare system strategies.
Table 5.1 details strategies suggested by the participants of this current study and the barriers to
cervical screening that would be resolved by implementing these methods.
113
Table 5.1: Strategies suggested by the participants and the barriers they would overcome
Category
Healthcare
Provider
Strategies
Strategy suggested by participant
Encouraged to get Pap test
- Family physicians, nurses and social workers should encourage their patients
to get tested and clearly explain the details of the procedure and why it is
important, without assuming prior knowledge.
Pap testing appointments
- Offering a female chaperone to be present and explaining the Pap test
procedure in detail before starting the test, (stating that it will be as discreet as
possible, and that they will be mostly covered during the test), to reduce the
woman’s anxiety and help them overcome their issue on shyness.
Female physician
- Women should always be asked for their preference, especially for their
gynecological needs. Hospitals should accommodate these requests or provide
information about alternative resources.
First Language physician
- First language physician should be available, especially for newly arrived
immigrants.
Women- only centres for conducting Pap tests/physical exams
- Women only centres should be provided where women can feel comfortable
and have a female physician attending to their healthcare needs.
Barrier(s) to
overcome
Lack of
communication
Shyness/privacy
concern
Female physician
unavailability
Language issue
Shyness/privacy
concern
Female physician
unavailability
Education and knowledge of the healthcare system: Cervical cancer and
screening
Healthcare
System
Strategies
- Including husbands and in-laws: awareness initiatives for cervical cancer and
screening should also target male family members (especially husbands), so
that they would encourage their partners to attend cervical cancer screening, in
addition to providing them with necessary support.
- Community center/mosque: educational sessions should be hosted in these
places to inform women about the need and the importance of Pap testing.
Lack of knowledge
and awareness of
Pap testing
- Immigrant Services/English language centres for immigrants: integrate
healthcare issues and inform Muslim immigrants about their well-being.
- More advertisements about cervical cancer screening in public locations and
having talk shows on the radio in their own language, to spread awareness of
Pap testing.
Transportation
Transportation to reach Pap testing appointments should be provided.
Monitoring Immigrants for Pap Testing
- Monitoring the cervical screening behaviour of immigrant women by setting
up a checking system that targets the immigrant population in Canada,
especially those who have newly arrived.
Pap test Reminder
-Pap test reminders in South Asian languages that explain the process in detail
and how it prevents cervical cancer.
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Dependence on
husband/in-laws
Transportation
Lack of
communication
Lack of knowledge
and awareness of
Pap testing
5.4 Limitations of the study
There are several limitations of this study that need to be considered. As the sample size
of the study was small and snowballing technique (taking referrals for potential participants from
individuals already interviewed) was used for recruiting participants, the study sample is likely to
over-represent a certain segment of the population. Most of the participants interviewed were
highly educated; this is not reflective of the South Asian Muslim immigrant population residing
in Calgary, or indeed Canada. Therefore, caution is recommended in generalizing results to all
South Asian Muslim immigrants in Calgary or Canada.
The researcher’s (Syeda Kinza Rizvi) own background and experience also plays a role
in selecting the identified themes and subthemes. However, similar findings to this study was
also reported by other researchers in the South Asian community in Canada (4, 31, 59) and the
United States (6).
Cross-cultural research is often challenging, especially with participant recruitment (59).
It can take months to years to recruit an appropriate study sample in vulnerable populations such
as the South Asian community, as members are reluctant to interact with researchers.
Additionally, issues are often found when conducting research in another language, especially
when studying individuals with limited fluency in English. Thus, being from this community and
having facility in their predominant languages (Sindhi, Hindi, Punjabi, Urdu), enabled me to
overcome these barriers.
5.5 Conclusion
To the best of our knowledge, this research was the first study conducted on South Asian
Muslim immigrants in Canada. The findings of this current study provide a starting point to
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understand how South Asian immigrants can improve their screening practice in the future.
Strategies to increase rates of screening may be applicable to other preventive measures, such as
mammography etc. These findings also provide an important insight for other South Asian
immigrant communities, such as Sikhs and Hindus, with whom they share similar cultural norms.
The South Asian Muslim population has unique attitudes and beliefs that differentiate
them from other communities. Within these there are numerous factors that can influence and
shape the healthcare seeking behaviour and practices of South Asian Muslim women. They are
interrelated, though some hold a stronger influence than others. For example, a very religious
family will likely follow their religious beliefs in healthcare seeking behaviour, even if these
contradict their cultural beliefs. This demonstrates the range and complexity of these influential
factors and emphasizes the importance of research on different ethnic and religious groups, in
order to implement effective strategies to change healthcare behavior and increase cervical
screening.
Factors that could affect screening views and practices can be lack of knowledge, culture
norms, societal expectations and gender roles. These elements can further be combined with
religious beliefs that can also provide strict guidelines as to when, how and from whom to get
treatment.
Like other preventive measures, Pap testing is not recommended, nor is it generally
offered, to asymptomatic women in Pakistan and Bangladesh. In the majority of developing
countries, the use of private care determines access to physicians who advocate preventive
measures and treatments such as cervical screening. On the other hand, the public system is
under-resourced and understaffed, so does not communicate or provide preventive services.
116
The Canadian healthcare system and providers should take into consideration the
preference for female physician, especially for gynecological concerns among the South Asian
community. unavailability of female physicians, or seeing a male physician for gynaecological
reasons, causes severe discomfort among the South Asian Muslim immigrant population.
Physicians should consider South Asian Muslim women’s attitude towards a male physician and
accommodate her preference, to reduce negative experiences. The Pap test appointment,
especially for women getting tested for the first time, should be longer in duration, to explain the
Pap test procedure to women in detail and to answer any of their questions. Painful Pap test
experience can be a barrier to prevent cervical screening among women. This is a major concern
and, as far as the women were concerned, reflects the poor training of medical professionals that
results in the discomfort of women while having the test.
There are also limitations in what recommendations can achieve, as not all barriers can be
resolved. Numerous factors influence cervical screening practice among South Asian Muslim
immigrant women, thus it is challenging to implement culturally-sensitive strategies that resolve
all of their issues. Certain cultural norms cannot be changed quickly, such as male dominance
and South Asian Muslim women prioritizing family over themselves. However, efforts to
making South Asian Muslim immigrant women independent of their husbands/in-laws, should be
implemented. For example, providing transportation to testing centres and providing daycare for
their children during their appointment, could provide increased uptake of cervical screening.
Overall, the findings of this study indicated various factors that can influence the practice and
views of South Asian Muslim immigrant women regarding the different barriers to screening.
Improving healthcare access to immigrants and providing culturally-sensitive information can
increase the rate of cervical screening, as well as other preventive measures.
117
The information from this study can be used to initiate new strategies and interventions,
as well as improve the existing ones, to encourage cervical cancer screening. The study findings
can also aid in health promotion strategies in this population, and the South Asian community in
general. Future research should include the continuing investigation of South Asian communities
of other religious backgrounds through qualitative measures, to determine their perceptions and
barriers to screening. Participants’ ethnic, religious and socio-economic backgrounds should be
factored in when selecting the study population. Examining the effect of these characteristics in
different groups, can provide a framework of how screening behaviour is shaped by cultural and
social norms. Due to time constraints and limited resources, this study only asked participants for
strategies to improve screening. Future research should engage South Asian women in planning
an intervention program for their community and provide appropriate incentives for their
participation.
118
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Appendix A- Letter of Support from Hussaini Association
125
Appendix B- Research Protocol
Title: Identifying Barriers to Cervical Cancer Screening Faced by South Asian Muslim
Immigrant Women in Calgary
Research Team: Dr. James A. Dickinson (Principal Investigator), Syeda Kinza Rizvi
Background
Cervical screening is very effective for those who participate, yet screening rates are lower in
certain populations such as immigrants, refugees and Aboriginals. Recent immigrants (living in
Canada for 10 years or less) are half as likely to be screened compared to Canadian born and
long-term residents in Canada. This behavior may be influenced by religious or cultural beliefs.
Islam is the second most frequent religion in Canada: more than a million immigrants identified
themselves as Muslim in 2011. The continued influx of Muslims immigrating to Canada with
different health knowledge, perception and practices, requires attention to these sub-populations.
Low screening rates are due to multiple barriers such as availability of a female physician, health
knowledge and cultural differences. Understanding the beliefs, awareness and knowledge of
Muslim women about screening will assist us to better identify the barriers to cervical cancer
screening and how to overcome them.
Rationale
Worldwide, cervical cancer is the second most common cancer in women and seventh overall,
with an estimated 528,000 new cases in 2012. The large majority of cases (~85%) occur in less
developed countries where cervical cancer accounts for 12% of all women’s cancers. In Canada
before screening, the lifetime incidence rate for cervical cancer was around 2% and only half of
them would survive. Since widespread screening and early treatment, most invasive cervical
cancer is due to never getting a Pap test or having a long interval between tests. Immigrants are
less likely to practice cervical cancer screening. In particular, South Asian immigrants have
lower screening rates: only 32.8% reported having a Pap test in a South Asian community-based
study conducted in United States.
Scope
Islam is one of the major religions on the North American continent and very limited research
has been conducted on this sub-population. The population of Muslims in Canada has
dramatically increased over the last 20 years and by 2030, it is expected that Muslims will
comprise 6.6% (2,661,000) of the total Canadian population. While Muslims are ethnically and
racially diverse, many Muslim women are likely to share key principles, values and beliefs based
upon the religion of Islam. Various quantitative studies conducted in USA and Canada has
shown that South Asians in particular have very low cervical cancer screening rates. There is
very limited number of qualitative studies looking at barriers to screening within immigrant
populations in Canada. In particular, barriers that South Asian Muslims immigrant women face
regarding cervical cancer screening is not well understood and needs further exploration. This
study will focus on South Asian Muslim immigrants to understand their perspective, traditional
and religious beliefs that can influence cervical cancer screening practices.
126
Research Objective
To understand perspectives and identify barriers towards cervical cancer screening of South
Asian Muslim immigrant women of Calgary.
Study Design
A qualitative approach will be used that is ideal for research questions that require understanding
of the participants’ views. The study will be conducted with South Asian Muslim immigrant
women in Calgary to provide deeper understanding of their perspectives regarding cervical
cancer screening and the barriers they face. Thus, this approach is appropriate for the proposed
study as it aims to understand the viewpoint of South Asian Muslim immigrant women without
making any value judgment and focuses on their perspective within their social world.
A female South Asian Muslim immigrant interviewer (Syeda Kinza Rizvi) will interview
participants one-on-one. Due to the interviewer having a similar background and easier to trust
than a complete stranger, participants will be able to share their perspective through open-ended
questions helping us understand and identify barriers to screening.
Participants
Snowball sampling will be used to recruit 15-20 South Asian Muslim immigrant women.
Eligibility Criteria
A sample of South Asian Muslim immigrant women was needed and the following inclusion
criteria were used for participation in the study:
1) Be a female Muslim (level of religious practice or parents’ religion not relevant)
2) Be a South Asian immigrant from India, Pakistan and Bangladesh (no restrictions regarding
the length of residence in Canada)
3) Be 25 years of age or older (in Canada, cervical screening is recommended for sexually active
women between the ages of 25 and 69)
4) Be proficient in English, Hindi, Sindhi, Punjabi or Urdu (languages that the researcher can
fluently speak)
5) Be able to read the English consent form
6) Either have not had a Pap test or only 1-2 Pap tests in the last ten years (any country)
Procedure
a) Pre-study identification of potential participants (meets inclusion criteria)
b) Potential participants will review the study consent form. If willing to proceed, participants
will provide signed consent.
c) Participants will be interviewed one-on-one in private setting.
d) An interview guide will be used to elicit participants’ experiences. The interview will be
audio-taped (with participant’s consent).
e) Study participation is approximately 60 minutes.
f) After completing the interview, participants will be thanked for their participation.
127
Appendix C- Interview Guide
My name is Kinza Rizvi and I am doing a Master’s degree in Community Health Science at the
University of Calgary. I am looking at Cervical Cancer in South Asian Muslim Immigrants. My
research goal is to learn more about your perspective on cervical cancer screening. By
understanding the potential barriers faced by Muslim women, we hope to develop services and
education to meet their needs. We hope this will increase screening and reduce the chance of
cancer.
I will be asking about what problems you face when it comes to screening and what do you want
to change about the screening process. What services do you want that can make healthcare
more accessible and convenient for you?
We assure you that our conversation will remain private and confidential. No information will be
saved under your real name at any time. Thank you for your willingness to help me with my
study. The results of this study could result in changes to the healthcare system that would make
screening more convenient for Muslim immigrant women and hopefully, prevent cervical cancer.
* Probing questions follows the main questions to ensure all relevant topics are covered.
1. Demographics
I would like to ask you some demographic questions
a) What is your age?
b) What is your education?
c) When did you come to Canada?
i. Where did you come from (country of origin?)
e) What is your marital status?
i. What is your partner’s education level and occupation?
ii. What is your partner’s country of origin?
f) Do you work?
i. Part-time or full-time?
ii. How diverse ethnically is your workplace (people from different ethnicity)
2. Healthcare Utilization
Could you please tell me your views about the Canadian healthcare system and physicians?
a) Where do you go for treatment mostly? How would you describe the service provided there?
b) Where do the males in your family go?
c) What are the most important things you desire in the physician?
i. Which one is most important and Why?
d) If you are in a life and death situation and there is no physician available that meets up your
most important trait you said before, will you get treated or leave and why?
ii. Who else will be involved in this decision?
128
ii) Will you like to share some of your or someone you know who experienced being
unable to find a desired physician?
3. Knowledge about Cervical Cancer
Could you please tell me anything that you know about cervical cancer?
a) What do you know about cervical cancer or anything that comes to your mind about it?
b) Who is mostly affected by cervical cancer?
c) Is it preventable?
4. Knowledge about Cervical Cancer Screening
a) What are your views about cancer testing (screening)?
b) Were you ever asked about Pap testing by your physician?
i. How did they describe it to you?
ii. If you said no, did your physician explain its reason/importance?
c) If you were tested, when was the last time you got tested?
i. Why didn’t you do it again?
d) How often do think/know you should be tested for cervical cancer screening?
e) When you think women should not get Pap testing or do not need it?
5. Barriers to Cervical Cancer Screening
Could you please tell us problems that immigrants face with cervical cancer screening?
a) What are the problems to cervical cancer screening in Muslim immigrants?
b) Were these or other barriers present in country where you came from?
b) What are the barriers that stops you from Pap testing (if more than one ask following)
i. Which is the biggest barrier
ii. Why?
iii. Were these or other barriers present in country where you came from?
6. Barriers to overcome in Cervical Cancer Screening
What actions you think should be taken to make cervical cancer screening easier for Immigrants?
a) How should we encourage Muslim immigrants to get cervical cancer screening?
b) Have you seen or heard any actions to increase cervical cancer screening?
These were all the questions I had, is there anything else you would like to tell me.
Thank you for your time. I appreciate it.
129
Appendix D-Consent Form
Date: ______________
Participant ID: _____________
CONSENT FORM
TITLE: Identifying Barriers to Cervical Cancer Screening Faced by South Asian Muslim
Immigrant Women in Calgary
SPONSOR: University of Calgary
INVESTIGATORS: Dr. James Dickinson, Syeda Kinza Rizvi
This consent form is only part of the process of informed consent. It should give you the basic
idea of what the research is about and what your participation will involve. If you would like
more detail about something mentioned here, or information not included here, please ask. Take
the time to read this carefully and to understand all the information. You will receive a copy of
this form.
BACKGROUND
Cervical cancer is a common cancer for women from 30 years and onwards. Screening, with a
Pap test, can prevent death from cervical cancer when women are regularly tested. Previous
research shows that women from South Asian countries have low screening rates. We are talking
to South Asian women like you to understand what stops them from having Pap testing.
WHAT IS THE PURPOSE OF THE STUDY?
By talking to South Asian women and learning their ideas about screening, we hope to develop
services and education to meet their needs. We hope this will increase screening and reduce the
chance of cervical cancer.
130
WHAT WOULD I HAVE TO DO?
I will talk to you with a set of questions, to find out what you think. Each interview will be
between 45 minutes to a maximum of 60 minutes long. After data has been analyzed, we might
want to talk to you again if you are willing.
WHAT ARE THE RISKS?
There are no specific risks to you from participating. If you have any concerns during the
interview process, you can raise them with the interviewer.
WILL I BENEFIT IF I TAKE PART?
If you agree to participate in this study there may or may not be a direct benefit to you. The
information we get from this study will help us to understand the problems of cervical cancer
screening faced by South Asian Muslim immigrants in Calgary and may lead to programs that
help to increase screening rates in the future.
DO I HAVE TO PARTICIPATE?
This study is voluntary and you may leave at any time during the interview. Please feel free to
stop me any time during the interview if you would like to leave the interview. You may skip
any question(s) you do not wish to answer during the interview that made you feel
uncomfortable or for any other reason.
WILL I BE PAID FOR PARTICIPATING, OR DO I HAVE TO PAY FOR ANYTHING?
There are no direct costs to you for being in the study. We will not pay you anything for your
participation.
WILL MY RECORDS BE KEPT PRIVATE?
All the information will be kept confidential. Your name will be kept separate from the interview
information, so it cannot be identified by others. All the research recordings and papers will be
131
kept in a locked file in a locked room. Only the researcher and her supervisor will have access to
this data.
SIGNATURES
Your signature on this form indicates that you have understood to your satisfaction the
information regarding your participation in the research project and agree to participate as a
participant. In no way does this waive your legal rights nor release the investigators or involved
institutions from their legal and professional responsibilities. You are free to withdraw from the
study at any time without jeopardizing your health care. If you have further questions concerning
matters related to this research, please contact:
Syeda Kinza Rizvi
If you have any questions concerning your rights as a possible participant in this research, please
contact the Chair, Conjoint Health Research Ethics Board, University of Calgary.
I give permission for this interview to be audio-recorded:
Yes ☐
Participant’s Name
Signature and Date
Investigator/Delegate’s Name
Signature and Date
Witness’ Name
Signature and Date
No ☐
The University of Calgary Conjoint Health Research Ethics Board has approved this research
study. A signed copy of this consent form has been given to you to keep for your records and
reference.
132
Appendix E-Coding Structure
100 DEMOGRAPHICS (Table)
101 Age
102 Education
Country of Origin
Marital status
Partner's country of origin
Residence in Calgary
Partner's education
Have children
103 Year came to Canada (# of years
in Canada)
Observed English Proficiency
Partner's occupation
Job (full-time/part-time)
200 ATTITUDE, KNOWLEDGE, BELIEFS What are the attitude, beliefs (cultural & religious) and
knowledge of South Asian Muslim immigrant women about health, utilization of healthcare and Pap
testing?
201
Knowledge about healthcare system
202
Knowledge about cervical cancer/Pap test
203
Preferences for physician characteristics (*most important)
204
Cultural, social and religious norms
205
Views about health screening in general (cancer specifically)
206
Modesty/shyness/personal space
300 HEALTHCARE SEEKING PRACTICES What are the healthcare practices (including pap
testing) of South Asian Muslim immigrant women?
301
Healthcare Seeking behaviour by Scenarios
301.1
Emergency/Life or death
301.2
Symptoms
301.3
Prevention/Screening (includes Pap testing
history & willingness)
What are the experiences of South Asian Muslim
immigrant women regarding the healthcare system (including Pap testing)?
Comparison of Canadian healthcare system with back home
401
General Experience with healthcare providers (midwife, physicians) including experience with
402
400 EXPERIENCE WITH HEALTHCARE SERVICES
prior Pap test.
402.1
402.2
403
404
Positive
Negative
General Experience with healthcare system
403.1
403.2
Pap Test Experience
404.1
404.2
404.4
Positive
Negative
Someone has asked them about Pap test
Description of Pap test & its importance
Marketing Seen or heard any measures to
encourage Pap testing Measures in media,
that encourage Pap testing
500 BARRIERS TO PAP TESTING (M)=Muslim immigrant (P)=Personal (G)=General, applies to all
immigrants What are barriers to Pap testing with participants (P) and immigrants (including Muslim
immigrants (M)?
501
Healthcare Providers Barriers
501.1
Lack of communication about this topic by
133
502
healthcare providers (M) (G)
Pap procedure painful/Uncomfortable (P) (G)
501.2
Healthcare System Barriers
502.1
Not having/want a female physician (P) (M)
(G)
Checking system for immigrants (G) (M)
502.2
503
Personal Barriers
503.1
Inhibition/Shyness/concern about private
parts/personal space (M) (P) (G)
Immigrant Women’s lack of
knowledge/awareness/importance of Pap test
(M) (P) (G)
Fatalist belief/behaviour -preventive
measures do not prevent (P) (M)
Lack of time (P) (G) (M)
Prioritize family members over self (P) (M)
Dependence/permission from husband (M)
(P) (G)
Same behaviour as back home (M) (G)
Forget the Pap test/ Lazy (P) (M)
Language Issue (G) (M)
Having one sexual partner
503.2
503.3
503.4
503.5
503.6
503.7
503.8
503.9
503.10
504
No Barriers
600 STRATEGIES TO ENCOURAGE PAP TESTING
(M)=Muslim immigrant (G)=General, applies
to all immigrants. What are the strategies to improve Pap-testing in immigrants?
601
Healthcare providers strategies
601.1
Encouraged by physicians to have a Pap test (M) (G)
601.2
Role of social workers (M) (G)
601.3
Show genuine concern (M)
602
Healthcare system strategies
602.1
More female physicians (M) (G) (P)
602.2
Separate physician/center for conducting Pap test/physical
exams (M) (G) (P)
602.3
Increase awareness about Pap test, healthcare system (M) (G)
(P)
602.4
Speaks their language (M) (G)
602.5
Needs to be more proactive towards immigrants (M) (G)
602.6
Breaking Social isolation/increasing social interactions (G)
(M)
602.7
Providing transportation for Pap testing center (M) (G) (P)
602.8
Checking System for Pap test (G) (M) (P)
602.9
Offering Chaperone for Pap testing (M)
602.10
Letter for reminding Pap test (M) (G) (P)
603
Personal Strategies
134