NOTE TO USERS This reproduction is the best copy available. UMI* INTIMATE STORIES: EXAMINING PRINCE GEORGE WOMEN'S AWARENESS ABOUT AND USE OF CERVICAL SCREENING SERVICES by Virginia Lynn Russell B.Sc. (hons), University of Northern British Columbia, 2009 THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN COMMUNITY HEALTH UNIVERSITY OF NORTHERN BRITISH COLUMBIA February 2011 © Virginia Lynn Russell, 2011 1*1 Library and Archives Canada Bibliotheque et Archives Canada Published Heritage Branch Direction du Patrimoine de I'edition 395 Wellington Street Ottawa ON K1A 0N4 Canada 395, rue Wellington Ottawa ON K1A 0N4 Canada Your file Vote reference ISBN: 978-0-494-75154-1 Our file Notre reference ISBN: 978-0-494-75154-1 NOTICE: AVIS: The author has granted a nonexclusive license allowing Library and Archives Canada to reproduce, publish, archive, preserve, conserve, communicate to the public by telecommunication or on the Internet, loan, distribute and sell theses worldwide, for commercial or noncommercial purposes, in microform, paper, electronic and/or any other formats. L'auteur a accorde une licence non exclusive permettant a la Bibliotheque et Archives Canada de reproduire, publier, archiver, sauvegarder, conserver, transmettre au public par telecommunication ou par Nnternet, preter, distribuer et vendre des theses partout dans le monde, a des fins commerciales ou autres, sur support microforme, papier, electronique et/ou autres formats. The author retains copyright ownership and moral rights in this thesis. Neither the thesis nor substantial extracts from it may be printed or otherwise reproduced without the author's permission. L'auteur conserve la propriete du droit d'auteur et des droits moraux qui protege cette these. Ni la these ni des extraits substantiels de celle-ci ne doivent etre imprimes ou autrement reproduits sans son autorisation. In compliance with the Canadian Privacy Act some supporting forms may have been removed from this thesis. Conformement a la loi canadienne sur la protection de la vie privee, quelques formulaires secondaires ont ete enleves de cette these. While these forms may be included in the document page count, their removal does not represent any loss of content from the thesis. Bien que ces formulaires aient inclus dans la pagination, il n'y aura aucun contenu manquant. 1*1 Canada ABSTRACT The purpose of this research was to examine contributing factors in women's use of cervical screening and to promote cervical health and screening awareness for young and/or vulnerable women in Prince George, B.C. The project was a community-based participatory research project that took place over a six-month period and organized in three stages, including: 1) using questionnaires with women in the community to try to better understand women's lives and lived experiences, 2) facilitating health groups for four months to build deeper relationships with women in the community and, 3) offering two community workshops to promote cervical health and screening. The objectives of the first two stages were to examine women's experiences with health services, and understand their personal her/stories and various health determinants that impacted them. The objective of the stage three was to evaluate how awareness about sexual health topics (i.e., the human papillomavirus (HPV), and cervical health/screening) changed as a result of arts-based and peer-driven interventions. Results from this study indicated that social determinants such as finances and education play an important role in women's awareness about, access to, and use of cervical screening services. Further to this, her/stories of victimization, gendered feelings, feelings of disempowerment, and life circumstances also significantly influenced women's comfort levels with, access to, and use of cervical cancer screening services in Prince George, B.C. in TABLE OF CONTENTS Abstract iii Table of Contents iv List of Tables vi List of Figures vii Glossary viii Acknowledgements x Introduction 1 Chapter One Overview of the Literature 1.1 Stating the problem 1.2 Preventative Cervical Screening Use 1.3 Cervical Cancer: Morbidity and Mortality 1.4 Cervical Health and Young Women 7 9 10 12 Chapter Two Methodologies and Approaches Part I: Methodologies Location in my Research Feminist Methodologies Anti-racist Methodologies Intersectionality Theory Social Determinant of Health Perspectives 14 14 18 19 21 23 Part II: With Women in Mind: Research Approaches Community-based Participatory Research Arts-based Research Techniques Chapter Three Methods The Research Environment Research Steps Stage One: Understanding Lives and Lived Experiences Stage Two: Planting the Seed Women's Health Groups Stage Three: Raising Awareness in the Community Workshop Format iv 24 25 26 28 28 29 31 32 35 36 Chapter Four Results Data Collection Part I: Questionnaire Demographics Formal education and employment Self-reported health and stress Finances, education and health Sexual history, partners, and condom use Relations with healthcare Use and comfort with cervical screening Awareness about cervical health and formal education Pre- post workshop awareness scores Part II: Qualitative Findings Her/stories of victimization Gender based feelings Feelings of disempowerment Life circumstances and access Lack of awareness Chapter Five Conclusions If I had a million dollars: Recommendations Post Script References Appendix 1 38 38 38 48 40 42 43 45 46 47 49 50 51 59 61 65 70 74 79 83 87 Questionnaire: Women's [Sexual] Health v 98 LIST OF TABLES Table 1 [p.42] Relationships of stress and health Table 2 [p.46] Women's level of comfort with their family physicians Table 3 [p.48] Awareness about HPV and cervical cancer VI LIST OF FIGURES Fig. 1 [p.34] Health themed collages created by health group members and researcher Fig. 2 [p.37] "Cervical doughnuts, supplies, art, and brochures: Women's cervical health workshop" (photograph 4" x 6") Fig. 3 [p.39] Women's levels of completed formal education Fig 4 [p.40] Women's self-reported financial statuses Fig 5 [p.40] Women's self-reported health statuses Fig 6 [p.41] Women's self-reported stress levels Fig 7 [p.43] Scatterplot: Women's self-reported health by finances Fig 8 [p.44] Ages of participants at time of first sexual intercourse Fig 9 [p.45] Frequency reported condom use by number of sexual partners Fig 10 [p.47] Women's reported comfort during last Pap smear Fig 11 [p.49] Cumulative HPV and cervical cancer awareness scores Fig 12 [p.55] "The Story of my Vagina" (collage, 12" x 15", multi-media canvas), by Patricia Fig 13 [p.57] "Bad Date Reporting Box", (photograph, 4" x 6"), by Catherine Fig 14 [p.58] "Man to monster", (photograph, 4" x 6"), by Catherine Fig 15 [p.60] "The Two-Sides of Pap smears" (collage, 12" x 15", multi-media canvas), by Belinda Fig 16 [p.63] "Brick wall", (photograph, 4" x 6"), by Catherine Fig 17 [p.64] "Empower Flower", (collage, 8" x 10"), by Melissa Fig 18 [p.65] "Take Control. Have Power" (Collage, 12" x 15", multi-media on canvas), by Tracy Fig 19 [p.67] "There's no Better Feeling than holding your Baby Close" (Collage, 12" x 15", multi-media on canvas), by anonymous participant Fig 20 [p.68]. "The Show Must Go On" (12" x 15" collage), by Virginia vii GLOSSARY The term Aboriginal includes persons reporting to identify with at least one Aboriginal group, i.e., North American Indian, Metis, or Inuit (Eskimo) and/or who reported as a treaty or Registered Indian as defined by the Indian Act of Canada and/or who reported they were members of an Indian band or First Nation. Art in this research refers to a product that is a result of a heart/mind interaction by women who have not be academically trained in the fine arts. The art created in this project is representative of self expression and social commentary and may or may not be aesthetically pleasing (Harding, 2009, viii). Collage is a composition of various materials (colors, images, text, textures and shapes) collectively glued to paper or canvas. Elizabeth Fry Society is a non-profit organization that works with and for women and girls in the justice system, particularly those who are, or may be, criminalized and/or victimized. Herstory or Her/Stories is a neologism coined as a part of a feminist critique of conventional historiography. In feminist discourse the term refers to history (or "his story") written from a feminist perspective and/or told from a woman's point of view . More Than a Roof Housing Society develops and manages inclusive communities of affordable housing for those affected by low to moderate incomes and individuals or families suffering with mental health and/or addiction issues. Positive Living North is a society in Prince George that is committed to encouraging activities which raise awareness of HIV/AIDS and Hepatitis C and its prevention. Prince George New Hope Society is a non-profit drop-in centre and safe space for women working in the survival sex trade industry and provides support and services for women in Prince George. Sex Work2: defined as the exchange of sexual services for remuneration or goods, where parties consent and negotiate the details of the transaction. Survival Sex: Survival sex is defined as the lack of opportunity to consistently exercise the right to refuse sex work in any circumstances. This lack of opportunity is due 1 Wikipedia (2011). Herstory retrieved January 11, 2011 from: http://en.wikipedia.org/wiki/Herstory 2 Definitions for: "Sex Work", "Survival Sex", and "Sex Trade Industry" are from: Prince George New Hope Society, (2007). A toolkit for organizations that work with survival sex workers and sexually exploited youth in the north, retrieved September 22, 2010, from: http://princegeorgenewhopesociety.ca/uploads/docs/givingushopetoolkit.pdf Vlli to predatory violence, criminalization of negotiation, poverty, abusive relationships and so on. Sex Trade Industry: The sex industry is a term used to describe the vast range of sexual services available to consumers. Workers, especially women, are highly sexualized in these environments. Some examples of the sex industry include street level sex work, pornography, telephone sex lines, live sex performances and erotic performances, fantasy services (submission-domination, bondage, and cross-dressing), erotic massage, and escorting. The term vulnerable for my research is used to denote members of ethnic, racial, and linguistic minorities, Aboriginal women, low-income women, lesbians, and women with disabilities. Young Women: for the purpose of this research the term young woman is used to describe women between the ages of 19-29 years of age. IX Acknowledgements To the women involved in the project - for trusting me with your stories and teaching me To the organizations that I had the privilege to work with - for welcoming me to your spaces To my supervisor, Dr. Sarah de Leeuw, and my committee members - for your continuous support and guidance To my family - for your love To Puck, Rest in Peace - for being the perfect company during my long days of writing To Sera and Kaleb - for being my inspiration to find a better way And to my guides and creator Thank you. Love and compassion are necessities, not luxuries. Without them, humanity cannot survive -His Holiness the Dalai Lama Introduction The purpose of my research was to examine contributing factors in women's use of cervical screening and to promote cervical cancer and screening awareness for young and/or vulnerable women in Prince George, B.C. The objectives of this project were twofold: 1) to examine women's experiences with health services, and to understand their personal histories and various health determinants that impact them and 2) to evaluate how, in a localized and geographically specific group of women, awareness about sexual health topics (i.e., the human papillomavirus (HPV), and cervical health/screening) changed as a result of arts-based and peer-driven interventions. Specifically, women's life experiences and their relations to health services and health determinants (for example: formal education, financial status, social status and culture) were explored in relation to women's reported health and well-being, knowledge about cervical cancer, and use of cervical screening services. It is my hope that this work can contribute to filling a gap in literature about creative solutions in primary health care for young and/or vulnerable groups of women - those disproportionately suffering from incidence, morbidity, and mortality associated with cervical cancer. My research was largely influenced by my own experiences and stories. My experiences of working with adult mental health and the opportunity I had to work with an Aboriginal health research organization were influential in how I approached my research. As a front line mental health worker before starting university, I noticed how the overall health and well being of people I worked with were affected by circumstances (often out of their control) such as chronic poverty, unemployment, social exclusion, and low levels of formal education (to name a few). It was not uncommon for many of the 1 women I worked with, in particular Aboriginal women, to be felt largely distrustful of the healthcare system. As a result it was sometimes difficult to establish trusting relationships. I began to notice that behaviours were counter productive to the woman's effective treatment. This often happened when or after they were treated poorly by health care professionals. Their behaviours included stopping medications or not returning for follow-ups, which subsequently led to a failure to achieve the goals set within the treatment plan. The interesting thing is that, more often than not, when asked why they were doing the things they were doing, the patient would not remember exactly what a professional said to make them upset, but they would always remember how the experience had made them feel. Many years later I found a quotation that exemplified this phenomenon: "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel" (Angelou, M, 2001). My experiences working with individuals, in particular women, who were vulnerable within the health system, impacted the reasons behind why I wished to pursue research with similar groups of women about highly personal health issues for my graduate work. As a result, through my research, I wished to examine if the way the health care system made women feel contributed to their awareness about and use of cervical cancer screening. The opportunity to work with and write for the National Collaborating Centre for Aboriginal Health (NCCAH) also had immense influence on my research. The NCCAH views health holistically and has done extensive work in highlighting how a range of socio-economic, cultural, and political factors play a role in the health and well-being of Aboriginal peoples. A recent publication written by this organization entitled, "Health 2 inequities and social determinants of Aboriginal peoples' health" (Loppie-Reading & Wien, 2009), was particularly important in shaping how I defined and thought about social determinants. In this paper the authors argue that social determinants for Aboriginal peoples must be inclusive and acknowledge factors such as colonialism, racism/social exclusion, and self-determination. Both these experiences led me to examine if determinants such as formal education, employment and income, racism, social status and/or exclusion were factors in women's awareness about and use of cervical cancer screening in Prince George. The decision to pursue questions about relations and/or feelings of disempowerment within the health system was solidified early on in my project by speaking to a woman who called herself 'Dee'. I met Dee while serving lunch at The PG New Hope Society. She had heard about my research project through friends and asked me if she could participate because of her "life experience", even though she did not meet the age criteria I'd set for my research. I agreed and met with her the next day to have coffee. Dee was in her late 50s, a mother, a grandmother, and a self-proclaimed "leader" for young women in the sex trade industry. She had worked in the survival industry for most of her teen and adult life while simultaneously struggling with addictions issues. When asked about her relationship with physicians (i.e., trust and comfort) she told me about how a doctor she had met with once had made her feel: "He always looked at me like I was a junkie.. .he doesn't have to say anything. All he has to do is look at you and like, we are from the streets we can read every little thing you do, right?" (Dee, June, 2010). Because Dee lived a high risk lifestyle she had learned, perhaps as a survival skill, to read people without them having to say anything to her. With the vast disparities in 3 cervical cancer incidences, morbidity, and mortality between different demographics of women, this experience made me wonder if negative experiences in health care contributed to women's decisions about participating in the use of highly intimate health care services, including cervical screening. If so, what could the health system do to address this problem? My interest in using 'art' as a methodological research tool stemmed from an early interest in my undergraduate studies with art research methods and art-based therapies. I was fascinated with my own visceral response to the making and viewing of art and also interested in the strong emotions that art often elicited in others. In 2010, when I was invited to present at a health workshop, I used arts-based methods as an education tool to talk about social determinants and issues affecting women's health. I discovered that this approach encouraged the attendees at the workshop to tell their stories about and experiences with health in unique ways. This was the first time I had done anything like this and the experience was extraordinary. The connection that was established within the group of attendees as a result of the storytelling through the art was beautiful. It was at this point I decided I would use art in my own research. I felt it would provide a creative way to educate women about cervical cancer as well as provide a unique way for women to tell their stories and thus for me to learn from them. With all of this in mind, I began research work, the results of which are in this thesis. Chapter one provides an overview of the literature, including a discussion about HPV and the role that it plays in the development of cervical cancer, disparities in cancer screening statistics, and incidence, morbidity and mortality rates associated with cervical cancers. This literature demonstrates that in order to address these inequities, an emphasis 4 is needed on listening to and educating young and/or vulnerable women about cervical health and screening. Chapter two, the methodology section, begins by locating myself in my research and explores the theoretical foundations which guide my research including: feminist and anti-racist methodologies, intersectionality theory, and social determinant of health perspectives. The second part of chapter two provides a discussion of approaches I employed for my research project - community-based participatory and arts-based research. These, as I discuss, resulted from the theoretical foundations explored and my personal experiences. Chapter three, the methods section, begins by introducing the environment in which the research took place and the research steps taken for this project are outlined. The goals of this project, to explore women's decisions to participate in cervical screening and promote cervical health awareness, were achieved by conducting a community-based research project that lasted for six months and was organized in a three stage process, including: 1) Understanding women's lives and lived experiences, 2) Planting the seed, and 3) Raising awareness in the community. Each stage is discussed separately in this chapter and I provide an in-depth discussion about the rationale behind and the type of data collected during each of the stages in the research process. Chapter four, the results section, is organized by data set type. The findings from the questionnaire are presented first and include the demographical profiles of the women participating in the study and relationships between variables including health determinants, health and level of awareness about cervical cancer, relationships within the health care system, and use of cervical screening services. The second part of the chapter introduces results from the qualitative data sets. This includes findings from 5 questionnaires, women's journals and photos, health group meetings, and art produced within the context of this project that expresses women's understanding about, access and use of cervical screening services. Finally, Chapter five provides the conclusions drawn from research, including an exploration about women's awareness about and use of cervical screening and associated recommendations. 6 Chapter One: Overview of the Literature 1.1 Stating the Problem The role of the human papillomaviruses (HPV) and use of preventative screening programs in cervical cancer are extraordinarily important topics in women's health worldwide. Preventative cervical screening, or Pap smears, is a procedure in which cells are scraped from the cervix to examine cellular changes. It has the ability to detect other important conditions such as infection, inflammation, as well as abnormalities in the endocervix and endometrium (Canadian Cancer Society, 2009). Women's participation in such screening procedures is thus an important health issue. Of particular importance, as outlined below, is the need for young women to understand and participate in screening. For North American women, cervical cancer is ranked as the second leading cause of cancer death of women in their twenties and thirties. The Canadian Cancer Society's Steering Committee (CCSSC) (2009) indicates that cancers of the cervix and ovaries accounted for 13% of all new cancer cases in women ages 15-29 years between 1992 and 2005. The age-standardized incidence rate in Canada, between 1992 and 2005, was 35.1 per million females (p.76). Overall, there were an estimated 1,350 new cases of cervical cancer and 390 cervical cancer-related deaths in Canada in 2006 (CCS, 2009). Cervical cancer is a slow-growing malignant neoplasm in the uterine cervix and does not generally exhibit early symptoms (The National Cancer Institute (NCI), 2009). The disease burden of cervical cancer is largely attributable to HPV infections (NCI, 2009). The Public Health Agency of Canada (PHAC; 2003) estimates that cervical neoplasia is 20 to 100 times higher in women with the HPV. There are more than 100 known types of HPV, of which over 50 infect the female genital tract, and of these, at 7 least 15 are defined as 'high risk' for cervical cancers (Moore et al, 2009). According to the Canadian Cancer Society (CCS; 2009), approximately 75 percent of women will have at least one HPV infection in their lifetime. The human papillomavirus is one of the most common sexually transmitted infections (STI) in the world. This growing epidemic is, in part, due to the fact that it is commonly asymptomatic in nature. Many people unknowingly carry and spread the viruses (PHAC, 2011; Sexuality and U3, 2009). Recent research examining prevalence and type distribution of HPV in 5,000 randomly selected British Columbian women revealed that overall HPV prevalence was 16.8%, of which high-risk HPV accounted for 13.9%. HPV prevalence was found to be highest in the youngest group of women (i.e., those under 20 years of age) with one-third of the samples containing more than one HPV type (Moore et al., 2009). Research demonstrates that most sexually active individuals, in particular young people, carry HPV viruses (CCSSC, 2009; PHAC, 2003). Additional cited risk factors in the development of cervical cancer are having multiple sexual partners, and/or pregnancy at an early age, and smoking tobacco (CCS, 2009). 1.2 Preventative Cervical Screening Use Early detection of HPV and cervical cancers can be found with regular Papanicolaou, or Pap-smear, testing (PHAC, 2011; CCS, 2009). The introduction of the Pap-smear, in the 1950s, has resulted in a dramatic decline in the incidence and prevalence of cervical cancer in Canada (PHAC, 2003, 2009). However, and as discussed below, women in Canada are still dying from this preventable disease. Approximately 3 Sexualityandu.ca is a Canadian web site committed to providing accurate and up-to-date information and education on sexual health. This website is an initiative of the Society of Obstetricians and Gynecologists of Canada. Awareness and promotional materials from this website were used in this study for health groups and workshops and were generously provided by the Youth Sexual Health Team at UBC. 8 50% of women diagnosed with cervical cancer in Canada had never participated in cervical screening (Decker et al., 2009; PHAC, 2009). In general, the use of health services in Canada has been found to vary considerably both by ethnicity and socioeconomic status (see Canadian Institute for Health Information (CIHI), 2008, 2010; Federal, Provincial and Territorial Advisory Committee on Population Health, 1999; Health Canada, 1999). An example of this variation in use of health services is a study conducted by Quan and colleagues (2006), which used data from the 2001 Canadian Community Health Survey to examine the use of health services between visible minority groups and Caucasian people. The visible minority groups examined in this research included Chinese, Japanese/Korean, South Asian, Filipino/Southeastern, West Asian, black and Latin American descent. The analyses consisted of 7057 members of visible minorities and 114,255 Caucasian people. Results were adjusted for sociodemographic and health characteristics and indicated that minority members were more likely than Caucasian people to have had contact with a general practitioner, but not specialist physicians. More specifically, minority women were significantly less likely to have been given a Pap test at an odd ratio of 0.47 (95% CI 0.39-0.56). In Manitoba, Aboriginal women participate significantly less in cervical screening than all other women. Young et al. (2000) found that cervical cancer screening rates in Aboriginal women aged 15 to 19 years exceeded that of non-Aboriginal women but that the opposite trend was observed for women aged 20 years and older. The overall cervical screening rate among Manitoba Aboriginal women was 52.6% compared to 60.2% in non-Aboriginal women (Young et al., 2000).The authors suggest that the low screening rates among women in this age category (20+) may be due to the loss of Aboriginal 9 women for follow-up Pap smears, an important health issue the authors argue needs to be addressed. Using the provincial health database, Johnston et al. (2004) examined screening use in 360,587 women aged 18 years and over. Results showed that women living in low-income households, Aboriginal and black women, as well as women living in rural locales participated significantly less in cervical screenings or Pap smears than all other women within this time period. In response to these disparities in service use, Grunfeld (1997) says that "despite our publicly financed health care system, personal expenses can be an important barrier to screening for women who are poor" (p. 544) and that special efforts need to be made to recruit "hard-to-reach" women, whom disproportionally represent those being inadequately screened. Cumulatively, research evidence indicates the importance of placing a particular emphasis on certain social factors or determinants such as education, income, and culture, in cervical cancer screening for Canadian women. The extent to which Canadian women are participating in regular screening for cervical cancer is an important public health issue needing to be addressed (Barnett & Shoveller, 2011; CCSSC, 2009; Shoveller et al., 2007). The extensive work of Dr. Jean Shoveller in the area of youth sexual health demonstrates a particular need for health care providers, researchers, and policy makers to consider social and structural inequalities contributing to sexual health outcomes, including social factors such as education, income, culture and ethnicity. All of which, Shoveller and colleagues argue, significantly impact individuals', in particular young women's, experiences with sexual health care providers and subsequent health outcomes (e.g., teen pregnancy; STIs) in British Columbia. 10 1.3 Cervical Cancer: Morbidity and Mortality Canada compares favourably in terms of international cervical cancer incidence rates. Worldwide, cervical cancer is the fifth most common cancer in women, with approximately 500,000 women being newly diagnosed with cervical cancer and 280,000 women dying from it each year. In less developed countries, this cancer ranks second, accounting for 15% of all cancers (PHAC, 2003). Low- and middle-income countries account for 80% of all cases (Cervical Cancer.Org, 2007). In Canada, cervical cancer is the 12th most common cancer diagnosed in women of all ages. Both incidence and mortality rates have declined substantially in Canada, with mortality rates decreasing by 73%) over the past 50 years. This trend coincides with the introduction of the Pap smear, or early screening technique (PHAC, 2003). Nova Scotia and British Columbia are two Canadian provinces with long-standing organized cervical screening programs. In the United States, the introduction of Pap smear testing has not been demonstrated to equally benefit all women. Although deaths of Caucasian women have decreased by approximately 70%, the same is not true of non-Caucasian women. For example, the incidence of cervical cancer for African-American women is still 65% higher than for non-Hispanic Caucasians with mortality rates remaining more than double (Engelstad, Stewart, Nguyen, Bedeian, Rubin, Pasick, et al., 2001). In a retrospective analysis of data from vital statistics from 1953 to 1984, Band and colleagues (1992) revealed that Native women in BC during this time period experienced up to six times the rate of mortality compared to non-Native women from cervical cancer. For all ages across the entire time period Native women had a death rate of 33.92 per 100,000, whereas non-Native women had 8.14, respectively. Similarly, in the United States a 11 statistically significant difference exists between age-adjusted cervical cancer mortality rates for Native American women (4.0 per 100,000) and the rest of the at-risk population for all races (2.9 per 100,000) (Espey, Paisano, & Cobb, 2005). Cumulatively this evidence indicates that women in certain groups have significantly higher morbidity and mortality rates from cervical cancers (see also Chaudhry, 1998; Nielson et. al, 1996). One plausible explanation for these disparities is inadequate public education about these topics. Barnett and Shoveller (2011) say that, "recruiting women to undergo Pap tests and the use of the new tests at a population level requires an improved understanding of women's knowledge about and attitudes towards cervical cancer, HPV, and HPV testing"(p. 3). They also argue that women's voices are missing from policies and programs. It is for these reasons that my research aimed to examine women's awareness about cervical cancer, explore experiences, and whether these factors influenced women's decisions to have a Pap smear. 1.4 Research and Education for Women, by Women: Addressing Women's Needs The promotion of adolescent sexual health involves providing and preparing young people with appropriate knowledge, motivation, and behavioural skills to improve sexual health and to avoid sexual health related diseases, such as HPV and cervical cancers (Health Canada, 2003). Barnett and Shoveller (2011) say the "failure of our health care system to reach women for testing, combined with a lack of available information about the link between HPV and the risk of cervical cancer, is a real danger to women's health" (p. 3). They argue that very few educational materials have been created that address HPV as a sexually transmitted infection and a factor in cervical cancer. Having increased awareness is widely hypothesized to influence women's 12 decisions regarding the use of treatments such as cervical cancer screening (see Barnett & Shoveller, 2011; Bigby et al., 2003; Reeler et al., 2009) however a gap in the literature exists about programs or initiatives in practice that place specific foci on these concerns. Young women face significant barriers when attempting to access sexual health services (Langille, Graham, Marshall, Blake, et al., 1999), including difficulties accessing appropriate physician services as well as experiencing a lack of comfort with and lack of effective communication in health care settings. Additional findings by Hampton and colleagues (in Schissel, 2006) indicated that young women felt context and care made a difference in their use of sexual health services. Young women indicated that 'caring staff that were 'non-judgmental' was the most important aspect contributing to their decision to access sexual health services (Schissel, 2006). The study indicated that young women used the term "comfortable" to describe four aspects of care: 1) physician and/or nurse relationships, 2) physical space, 3) physician and/or nurse/client communication, and 4) medical procedures (p. 170). These findings are important because young women are overrepresented among those diagnosed with HPV and suffering from cervical cancers. When talking about the women's health needs, McKay (2009) says: "A new way of thinking about experiences is the first step in meeting the needs of women. Rather than pathologizing women's behaviours, we need to normalize our experiences, break down barriers to connection, encourage cautious relinquishing of control, and create safe contexts in which the public and private selves are equally welcome and valued" (p. 114). My research explores aspects such as comfort, trust, and communication in women's experiences with sexual health care and subsequent use of cervical health screening among largely understudied groups of women - young, northern, racialized and/or vulnerable women. 13 Chapter Two: A Discussion of Methodologies and Approaches Part I: Methodologies When I use the term 'methodologies' in my research, I am referring to philosophical and theoretical principles that inform my work. Sandra Harding describes methodology as "a theory and analysis of how research does or should proceed" (in Smith, 1999, p. 143). This chapter begins with me locating myself in the research. I follow then by outlining, and then critically analyzing, a variety of philosophies and theories that inform how I explore issues of health, particularly as it is linked to social justice. In particular, I discuss the role that feminist and anti-racist methodologies, intersectionality theory, and social determinants of health perspectives, all of which impact the way that I thought about, planned and conducted my research. Location in Research "When we self-locate, we represent our own truths. We represent our own reality" (Absolon & Willett, 2005, p. 109) Locating yourself within your research is to "make claim about who you are and where you come from, your investment and your intent" (Absolon and Willett, 2005, p.l 12). This process of 'location', I believe, is essential for my research project. First, I believe it benefits me as a researcher by increasing my awareness about how my own value or belief systems can and do inform biases within my work. Second, by stating to participants and readers my location within my research, I invite transparency about me and my work (i.e., intent). My own epistemological views, or ways of 'knowing' what I 'know', shape my thoughts, beliefs, attitudes and ultimately, my views about the world and therefore also my research. Our assumptions about human behaviour, social, economic and political processes shape our research in a profound way and I do not 14 believe there is any research free from these personal assumptions or biases. Lavalee (2009), states that, "every time we think, use reason, and figure, emotion is tied to that process; therefore, it is impossible to be free of emotion and subjectivity in research" (p.23). My belief that objectivity is impossible within research guides my sense that one must always locate and position oneself in their research. When we locate ourselves, we become transparent in our positions and our intents. While my research is informed by feminist, Indigenous, and critical anti-racist methodologies, it is also significantly influenced by my values and life experiences. I recognize that my personal history is deeply rooted within the intent of my research - the improvement of health education and outcomes for young and/or vulnerable women. I am passionate about this topic because I was a member of this population; a young and single mother. The lenses, perspectives, beliefs and assumptions that I use in my research draw from some of my own experiences of, quite literally, living this social category. Being both a young and single parent in a northern context has taught me a lot about the effects that health determinants, such as education or social status, can have on relationships with the health care system and use of associated health services. As a young teenage mother I had several very memorable negative experiences with physicians in Northern BC. An example of one negative experience I had concerns a physician's refusal to do pre-natal care for me because she had recommended I abort my baby. She said I was too young to be a mother and that keeping a baby would be a 'reckless decision'. I will always remember how this physician made me feel - judged, rejected, and disrespected. As I matured I began realizing more that a physician's position is not to make moral decisions, but rather to facilitate my health decisions. I was extraordinarily blessed to 15 have family support. My mom helped me find a new and more accepting health care provider. As a result of my experiences, I wondered how many women in northern locales feel they lack choices in their health care decisions and/or providers. To this day, my negative experiences affect my willingness to see physicians. Because of my experiences I think, and hope, I have a better understanding of some of the many barriers that young and/or vulnerable women face in the achievement of optimal health and wellbeing. My experiences have shaped the lenses through which I view women's health. My experiences thus also shape my research. I recognize that I entered this research project with my own set of values, beliefs, and biases about some of the issues I explore. The biases I hold in my research, particularly that relations in the health care system can be an oppressive and negative experience for young and/or vulnerable women, thus resulting in declined use of services, can be both positive and detrimental to my research. The positive aspect is that because of my biases I chose to be purposively inclusive of young/vulnerable women and explore their experiences. The detrimental aspect of having such biases is that it has the potential to decrease my sensitivity towards women's positive experiences with health care and providers. I had to take special care to be sure that my research truly represented the voices of all women involved in the project - both their positive and negative experiences. In addition to this, it was vital that my research recognize that women's circumstances and experiences are all extraordinarily unique. Just because a woman lives within certain demographics does not necessarily mean that her experience with health care is the same as that of others within the same demographic. 16 Philosophical and Theoretical Principles Informing My Work As outlined in the previous chapters, research overwhelmingly indicates disparities in women's use of screening services and, associatively, in rates of morbidity and mortality associated with cervical cancers (see Decker et al., 2009; PHAC, 2003, 2009). My research is a response to these concerning disparities. As I seek to understand these disparities, I draw from ideas developed by feminist, Indigenous, and antioppressive scholars who argue both that research must account for its role in (re)producing social inequities and that women's health is intimately linked with broader sociocultural systems of power (Brown & Strega, 2005; Green, 2007; Smith, 1999; Wilson, 2008). At the broadest of levels, feminist theory suggests that women remain socially marginalized subjects. Feminism seeks to address this marginalization by undertaking work to bring about equality amongst the genders. When describing my research as informed by 'feminist methodologies' I am explicitly recognizing the political nature of my work, highlighting that - as other feminist health researchers have pointed out - there is a link between the embodied status of being a woman and the unequal access to and experience of health care. When speaking of the importance of qualitative inquiry in feminist research, Olesen, Taylor, Ruzek and Clarke (1997) say that: "Because qualitative or interpretive research can be particularly powerful in grasping women's lived experiences, researchers have posed critical questions that go beyond data gathering such as how women's experiences are conceptualized and presented and whose voices are heard" (p.586). 17 In order to address issues of marginalization and social inequity, my research aimed to be inclusive of a variety of women's voices in the Prince George community. This meant establishing relationships with community organizations that served women. This gave me access to voices of women from vulnerable economic and/or social positions (i.e., women in survival sex trade industry); racialized women (Aboriginal women); and young women - all of which I argue are heard less often than other voices. Acknowledging diversity played an important part in my research and education workshops. Feminist Methodologies Feminist methodologies place emphasis on uncovering or exposing social relations that deny equal opportunity to oppressed peoples, in particular women. The intent is "to give voice to women and presence to their lived experiences" (Reinharz, 1992, p.4). As a feminist researcher I aimed first to understand how women in my community experience their worlds, I then proceeded to build relationships, and then I collaboratively worked with young women in the community to create health education workshops about cervical cancer. Feminist methodologies acknowledge that research should be for/by women rather than on or about women (see Ironstone-Catterall, et al. n.d). As a result, my research aimed to be inclusive of voices that were often silenced (e.g., women in the sex trade industry) and be participatory-action based. By collaborating with young women in the community, rather than independently conducting research about women, I needed to acknowledge power differentials within the 'researcher/participant' relationships. I had to entrust a large portion of the decision making about the groups and workshops to the women involved in the project. I 18 recognized that the women participating knew more about individual and community needs associated with sexual health than I did. The nature of my interactions and relationships with the women involved in the project was enhanced, I feel, by my equal participation throughout the research process (i.e., talking about my personal experiences and participating in making art). I considered myself both an 'outsider' and an 'insider' in the context of my research. As an 'outsider' I fully recognize the social privilege associated with formal education. As an 'insider', though, I took with me my social position as a single/teen mom. I felt that my full participation in the project assisted in building trusting relationships with women which was important step in ensuring that all stages of the research were informed by the women involved, rather than solely by me. Anti-racist Methodologies Anti-racist methodologies influenced my research. Many critical Indigenous scholars suggest that social marginalization is experienced and brought about not just by gender inequalities, but also by divisions wrought by colonization of Indigenous peoples (e.g. Smith, 1999). Because health literature demonstrates that vast inequities exist across North America between racialized women and all others, it was important that I sought to understand if power relations, particularly race-based power inequities, in the health system contributed to women's participation in cervical screening. The purpose of anti-racist methodologies is two-fold. They address historical traumas of colonization and address how these have reflected upon and shaped society's existence (Alfred, 1999) and they "seek understanding about social oppression and how it helps construct and constrain identities (e.g., race, gender, class, sexuality)" (Dei, 2005, p.3). The work of post colonial psychologists Duran and Duran (1995) further, this 19 discussion and suggest, that the effects of colonization still directly impact the health and well-being of Aboriginal peoples, who experience 'intergenerational trauma' and 'internalized oppression'. Both issues, the authors argue, are problematic to Aboriginal peoples' physical, mental, emotional, and spiritual health. As a result of colonial processes, the idea of 'research' has become linked to European imperialism and colonialism for many Aboriginal peoples (Smith, 1999). With all of this in mind, the task for anti-racist researchers/educators should be to, "Identify, challenge, and change the values, structures, and behaviors that perpetuate systemic racism and other forms of societal oppression" (Dei, 2005, p. 4). I share these beliefs about social marginalization, and I desire to lower cervical cancer incidence/morbidity/mortality for vulnerable and/or Aboriginal women. My research thus aimed to give voice to women with historical familial trauma (e.g., residential school), re-current victimization (e.g., sexual exploitation; intergenerational trauma), or who experience other forms of societal oppression (e.g., stereotyping; racism). As a result of these methodologies, I located myself in the Prince George New Hope Society and Elizabeth Fry Society, both organizations aimed at serving vulnerable groups of women. When discussing the importance of addressing oppression in research, Brewer (1993) says, "Anti-racist research places the minoritized at the center of analysis by focusing on their lived experiences and the "simultaneity" of [their] oppressions " (p. 16). In her book entitled, "Wild Garden: Art, Education, and Resistance", dian marino (1998) asks "How do we know when we're producing truly emancipatory materials or 20 when we're only reproducing colonial patterns?" (p. 6). In response to this question Reinsborough (2008) states: "What a successfully decolonized approach might look like is still unclear, but asking this question reveals a powerful intent towards self-reflexivity. The question politely demands the critical questioning of one's location, methods, objectives, and approach in relation to colonialism and colonial subjects. It awakens us to the choice we have in the work that we pursue: to critically question our work and open ourselves up to the possibilities that then emerge, or to passively continue in default mode. Certainly, one begs a revolution more than the other" (p. 54). My research with women attempted always to account for and examine her/story (colonization) and the current day effects of her/story (stereotyping, intergenerational trauma). I chose a topic that involved inequitable access to health information and use of services (i.e., about HPV; cervical cancer screening) in great part so that I could participate in a social justice based community project aimed at improving awareness about these sexual health topics and empowering women who might embody marginalized social categories. Pursuing political action for change, I believe, might happen each time someone reads my thesis or listens to stories by me or the women involved in the project about our experiences. Intersectionality Theory Feminist and critical anti-racist methodologies are cornerstones of intersectionality theory (see Hankivsky & Cormier, 2009), a theory which is increasingly and successfully being applied to conceptualizing and understanding health inequalities. An intersectionality paradigm is "a normative framework that captures the complexity of lived experiences and concomitant interacting factors of social inequity" (Hankivsky & Christoffersen, 2008, p. 272). Further to this, intersectionality is defined as: 21 "A theory of knowledge that strives to elucidate and interpret multiple and intersecting systems of oppression and privilege. It seeks to disrupt linear thinking that prioritizes any one category of social identity, instead it strives to understand what is created and experienced at the intersection of two or more axes of oppression" (p.275). This theory mirrors my own beliefs about health, particularly as they are informed by feminist and critical anti-racist methodologies about health. I understand the achievement of health as based on foundational roots which are multidimensional and multifaceted rather than uni-dimensional in nature. For example, various socially and culturally constructed categories of discrimination have the ability to interact on multiple and [often simultaneous] levels, contributing to systematic social inequality. This, in turn, has the potential to also affect health decisions (e.g., a woman's decisions to participate in cervical screening) and subsequent health outcomes (premature mortality). Intersectionality theory places particular emphasis on the role of oppression/power and how these shape, and are shaped, by one another. This theory foregrounds the importance of rejecting linear thinking about social identities and/or social determinants. Instead it emphasizes how health is largely determined by interacting determinants, reminding us that "numerous factors are always at play" (Hankivsky & Christoffersen, 2008, p.276). As I explore in more depth in my discussion of methods, an intersectionality theory informs why my research was designed to examine a multitude of potentially mitigating factors in the lives of women that, in turn, contribute to their sexual health awareness and health behaviours. These factors include, but are not limited to: 1) continuity, comfort and trust with health care professionals and 2) social, emotional, and psychological factors resulting from life histories, circumstances and experiences (e.g., sexual abuse). 22 In the book, 'Research as Resistance', herising (2005) states, "I base my assumptions about research within a social justice framework grounded in emancipation of social oppression" (p. 132). I share these beliefs. Methodologically, then, I see the importance of using an equity based or social justice framework for research and then advocating for the emancipation from social oppression, marginalization, and stereotyping in society/healthcare. These theories informed how I thought about, planned, and collected data for my research project. By listening to women's stories, whether through interviews, journaling, photos, storytelling, or art, I feel I was able to better understand the plethora of barriers women feel they face in achieving optimal health. My research placed emphasis on giving voice to women in vulnerable social and/or economic positions in hopes to address the disparities seen in cervical cancer incidence, mortality and morbidity between women. Social Determinants of Health Perspectives Disease and health conditions, using this perspective, are thought to be a result of social, economic, as well as political forces, collectively referred to as "social determinants of health" (Wilkinson & Marmot, 1998). Social determinants of health perspectives outline the remarkable sensitivity to and relationship of health to our social environment. These factors are recognized on both an international (e.g., World Health Organization [WHO]) and national level (e.g., PHAC) as contributors to health. Many diseases determined by networks of interacting determinants, all of which have the ability to contribute to or negatively affect one's health. Different organizations have different ideas about what constitutes social determinants. For example, the World Health Organization identifies 10 main social 23 determinants. These include social status, stress, early life, social exclusion, work, unemployment, social support, addiction, food and transportation. In contrast, the Public Health Agency of Canada identifies twelve main social determinants. These include income and social status social support, education and literacy, employment/working conditions, social environments, physical environments, personal health practices, coping skills, child development, biology/genetic endowment, health services, gender and culture. Ultimately, by asking questions about social determinants of health, my research explicitly examined social determinants in the lives of women and whether some of these determinants influenced awareness about cervical cancer, relations in the health care system, and use of cervical screening. Part II: With Women in Mind: A Discussion of Research Approaches Based on the methodologies discussed previously there are a number of research approaches that I have chosen to employ as I tried to understand women's health disparities, particularly those associated with cervical cancer. The following section explores approaches used to undertake my research, each of which frames the next chapter wherein I review my research methods, or the specific steps I took to undertake the project. Community-Based Participatory Research The success of using community-based participatory research (CBPR) approaches to health problems has been well documented, particularly when working with marginalized populations (see Brown, 1991, Brown & Strega, 2005; Grunfeld, 1997). Specific to marginalized women and cervical cancer prevention, Christopher et al. (2008) demonstrated the importance and success of a community partnership intervention 24 approach, rather than the traditional public health approach which they argue "ignorefs] a substantial part of the dynamic and social nature of public health programs" (p. 831). Engaging in community-based research provides opportunity for women who are vulnerable to develop skills and achieve a sense of self/ability concerning improving important health issues both within their community and within their own lives (Brown & Strega, 2005; Christopher et al, 2008). As my project focuses on sexual health promotion for young women, mobilizing a CBPR approach is beneficial because it calls for full community involvement in 1) the assessment of health needs, 2) determining problems/causes, and 3) arriving at decisions about strategies to solve them. Overall, I believe using a CBPR framework emphasizes the importance of examining health behaviours, such as accessing preventative screening, and of using a wider lens that incorporates, or accounts for, the role that social and physical environments play in health behaviour decision making processes. Successful promotion and use of early detection programs requires an emphasis on strategies that will increase awareness, perceptions, and experiences about primary sexual health initiatives. As significant cervical cancer health disparities persist across Canada between groups of women (Band et al., 1992; Espey, Paisano, & Cobb, 2005), prevention strategies need to take into account social factors in order to successfully meet the needs of young, diverse, and/or vulnerable women about these topics (see Chabot, Shoveller, Johnson, & Prkachin, 2010; Shoveller, 2009). In response to these concerns, the purpose of my research was to explore awareness, perceptions, and experiences of women in Prince George to better understanding the barriers they face in use and access of Pap smears. 25 Arts-Based Research Techniques Leavy (2009) defines arts-based research practices as those "used by qualitative researchers which addresses social research questions in a holistic and engaged way in which theory and practice are intertwined" (p. 3). Using arts-based practices generally aims to "describe, explore, and/or discover" (p. 12) while also placing particular emphasis on the processes involved [as opposed to outcomes]. In speaking of the importance of art in research, Leavy (2009) states: "The arts, at their best, are known for being emotionally and politically evocative, captivating, aesthetically powerful, and moving; art can grab people's attention in powerful ways" (p. 12). Increasingly, academics, researchers and healthcare professionals alike are beginning to acknowledge the benefits of and turning to the arts with participants/patients due to the "therapeutic, restorative, and empowering qualities" (Leavy, 2009, p.9) associated with such approaches. There is also extensive work about the role of creativity in the field of education and social activism (e.g., Cropley, 2001; Felshin, 1994; marino, 1998) that influenced my decision to include art in this project. Of particular influence to my research was a local community project that used the creation of art as a means for theorizing about power/oppression with homeless women in Prince George (see Harding, 2009). In her book entitled "Healing Wounded Hearts" Fyre Jean Graveline (2006) writes: "I want to oppose Oppression. Violence. Abuse. Racism...Surviving daily marginalization requires more than revealing. Multifaceted layers of a PainFul mirage. Requires engaging our intuition. Imagination. Our Creative Abilities" (p. 39). 26 The creative arts/processes used for this project included: storytelling/journaling (Chang, 2008), visual arts (Graveline, 2004, 2006; Clover & Stalker, 2007; Felshin, 1994; Leavy, 2009), and photovoice (Castleden & Garvin, 2008) in the exploration of women's ways of knowing and seeing the world (see Cameron, 2002 for a discussion about creativity). 27 Chapter Three: Methods The Research Environment Health literature demonstrates that racialized people experience some of the poorest health across our country (see British Columbia Health Officer, 2009; CIHI, 2007). It is important then to be explicit about the ethnic and cultural diversity in BC and, in particular, Prince George. British Columbia (BC) is home to 198 separate and unique First Nations. This is by far the highest number of distinct communities in comparison to all other provinces and territories in Canada. Aboriginal peoples in BC represent approximately 4.8% of the total population (Province of BC, 2008). My research took place in Prince George, which is the largest city in Northern BC, with a population of 70,981. Prince George is often referred to as BC's northern capital (Statistics Canada, 2006). Within the population, 11% are Aboriginal and 6% visible minority peoples, with the largest visible minority populations being of South Asian (42%) and Chinese descent (19%). Research Steps The basis of my thesis is that in order to prevent cervical cancer, by early detection, education strategies are needed that increased sexual health awareness and use of cervical cancer screening procedures. In efforts to support my hypothesis, I undertook a community-based research project. The work was organized into 3 stages: • • • Stage One: Understanding - this stage explored women's lives and lived experiences Stage Two: Planting the Seed - this stage entailed building rapport and relationships with young women in the community Stage Three: Raising Awareness in the Community - this stage involved the offering of two collaborative community cervical health awareness workshops 28 Upon completion of these three stages, I had gathered quantitative and qualitative data (see Chapter four). Stage One - Understanding Experiences and Awareness about Cervical Health The purpose of stage one was to collect baseline data (to inform the education workshop) and more importantly, to establish rapport with the women in the community before inviting them to the workshops. In order to create successful interventions for young and/or vulnerable groups of women in Prince George I felt it would first be important to 1) gain a better understanding of women's lives and experiences and 2) gauge their awareness about various sexual health topics understood in the literature to impact screening services. Women were recruited from The Prince George Elizabeth Fry Society, 'More than a Roof Housing Society, the Prince George New Hope Society, and the University of Northern BC. Participants were recruited by word-of-mouth as well as pamphlets and poster. The only criterion for participating in the research project was that the participants identify as female and be between 19-29 years or age. A total of 22 young women participated in the first stage of the project. Data collection for stage one took place between June 2010 and November 2010. Stage one (the "understanding" phase) involved completing questionnaires with 22 women in Prince George. A self-designed questionnaire (48-item) was answered by all participants (see Appendix A). For the sake of both convenience and comfort, each participant was given the option of where they felt most comfortable answering the questionnaire. Some women preferred that I visit their home (in many cases because they had small children), some wanted to meet in a public setting (coffee shops), and others met me at the University of Northern BC. Upon meeting, each participant was given a 29 consent form followed by a verbal outline of the form. Before they signed the form, I took the time to ensure they understood their rights within research. Halfway through the questionnaire (directly prior to questions about sexual health) I reminded the women that if there was anything they were not comfortable sharing to let me know and we would move on. At the end of each interview the women received a BC Cancer education brochure and Pap smear reminder sticker and we reviewed knowledge about HPV and cervical cancers. Participants were asked if they would be interested in attending a women's cervical health workshop in the fall. Twenty one of the 22 women indicated that they would be interested in attending and left contact information with me for follow-up. Participants were given $15 for answering the questionnaire. I think it is important to mention here that at the inception of my project I had not planned to collect more than specific answers on questionnaires and did not think it would be useful to record the session. However, after meeting with the first few participants, I found that the stories they told could not be captured solely by checking specific boxes on the questionnaire. I thus recorded and transcribed 12 out of the 22 questionnaires but relied on hand written notes from the questions with 10 participants. I wrote participants' answers verbatim and combined the data with recorded sessions during thematic analysis. For this first stage of the research, the numerical data gathered from the questionnaires was entered into a statistical analysis program (Statistical Package for the Social Science - SPSS). It was later analyzed using this program. Demographics and aspects such as self-reported health, stress, financial position, cervical cancer screening use, levels of trust comfort and awareness about HPV and cervical cancer scores were 30 generated using SPSS. The program was also used to generate a correlation to examine relationships between social variables financial status and reported-health and a t-test to examine the role of education in self-reported health. Interviews from the questionnaires were transcribed using Express Scribe. Stage Two - Planting the Seed The purpose of the second stage of my research was three-fold, 1) to build rapport and trust, 2) explore lived experiences through mediums such as art, photos, and journals, and finally 3) collaboratively plan a community workshop, with women between the ages of 19-29 in Prince George. Stage two of the project involved recruiting women to participate in a monthly arts based cervical awareness women's group that I refer to as the "health group". Any woman between the ages of 19-29 years of age was welcomed to join, the only criteria being that she was available to meet once a month from June to October, 2010. During recruitment for the first stage of the project, the organizations I worked with helped me recruit four women who were interested in participating in the health groups. The original plan for my project was to recruit eight women to attend group meetings. Only four women, however, showed sustained interest in the project. Natasha4 was the first woman to show interest in the health group and was recruited from More Than A Roof Housing Society. She was 28 years old and a single mother of two young children aged three and six years. Ann, also recruited from the Housing Society and was 27 years old and also a single mother of three young children all under the age of five years. Catherine was 20 years old and was recruited through the Prince George New Hope Society. She was recruited because of her experience working with women at both 4 Self-selected pseudonyms have been used for each participant to protect their identity 31 the New Hope Society and Positive Living North. Tracy joined last and was referred to me by a coordinator of the young parenting program at the Elizabeth Fry Society. Tracy was 21 years old and the mother of two young children, aged six months and six years. Before the first health group, I met for coffee individually with each woman who had expressed interest to review the purpose of the research and details about the workshops. The four women answered the same questionnaire as the women in stage one and the quantitative data were later combined. The women were given consent forms to sign that gave me permission to use the hand written notes and/or tape recordings and any art/creative projects created during the meetings as data for my research. Women who agreed to participate in the health group were also given a journal to keep track of anything to do with the project: their expectations, concerns, and general thoughts about what they were learning in the group meetings. This was another data set I used, which they understood. Group members were also given the option to participate in the planning and leading of the women's cervical health workshops in late fall (the purpose of which was to coincide with the BC Cancer Agencies "Pap Awareness Week", October 24-31). Women's Health Groups The health groups took place once a month for five months. Meetings were held on June 04, July 08, August 06, & September 26, 2010 and ran from 2.5-3 hours. All days and times were decided by consensus so that as many women as possible were able to attend. Childcare and transportation were made available to the women for all of the groups. Women's groups were held at a family resource centre, the Prince George New Hope Society, a centrally located coffee shop, and a local restaurant. Locations for meetings were collaboratively decided on based on convenience for the attendees. 32 During the first meeting, June 4, the health group had a baking night to get to know each other better. All four women were able to attend the health group. Two of the women had e-mailed me their favourite recipes prior to the meeting so that I could pick up the appropriate baking ingredients. Women were asked to do a brief search on the internet prior to the health group and briefly share a few things they had learned that they did not know about before about HPV, cervical health, and/or screening. While baking cinnamon buns and chocolate chip cookies, we had group discussions about what the women had learned online and we then reviewed pamphlets about HPV, cervical cancer, and preventative screening5. The time line, goals, and objectives for the research project were outlined during this first meeting and my contact information was given to group participants. At the end of the group meeting, everyone received additional education pamphlets to give away. I asked the women (if they felt comfortable) to explore over the next month what women in their lives (i.e., family/friends) knew about HPV, cervical cancer and whether or not they participated in cervical screening. The second health group, July 8, was held at the Prince George New Hope Society. The theme for the second group was 'taking time and care for yourself. This group was attended by all four women. The meeting started off with deep muscle relaxation/meditation6. Health-themed collages on canvases were created during this group (see Figure 1). We discussed what other women in their lives knew (or did not know) about cervical health. In particular, we discussed whether the women they knew were accessing pap smears. The group was introduced to examples of photovoice and asked if they would be interested in making a collective photovoice scrapbook about 5 6 Educational materials and funding for this project was provided by the BC Cancer Agency Retrieved from 'Project Meditation' at: http://www.project-meditation.org/ 33 health and wellness in their own lives. All four of the women were interested. Those who did not have personal cameras were given disposable cameras and funds to develop the photos. After presenting our health and wellness collages to each other the group decided on a convenient time to get together the following month. The third meeting took place on August 6 and was held at a coffee shop in downtown Prince George and was attended by two women. At the beginning of the meeting I talked about HPV, incidence/morbidity/mortality associated with cervical cancers, and cervical screening. The group members also brought the photos they had taken the past month and write-ups about the photos in their journals. A collective book of photos was created and ideas about the community workshop were generated. Planning for the upcoming women's cervical health workshop was done during this meeting and the attending members chose to take lead on a task pertaining to the workshop. This included coming up with ideas about: catering, gift bags, education brochures, topics of discussions and recruitment. The September 26 health group focused on finalizing details about the planning of the community cervical health workshop and two women were able to attend this group. This final meeting was held over lunch and lasted 2 hours. Ideas about gift bags, art themes, and catering, and the completed education brochure for the workshop were presented during this group. The group also watched select chapters of an educational video prepared by the BC Cancer Agency entitled, A Women-Centered Approach to 34 Cervical Cancer Screening: An Educational Video and discussed how we could take the things we learned from the video to the workshop where we would be presenting. Stage Three - Raising Awareness in the Community: Workshops The third stage of this project was focused on raising awareness for young women in Prince George about women's cervical health topics. This stage entailed offering two women's cervical health workshops. The first workshop was offered at the Prince George New Hope Society drop-in centre on October 24 from 10am -1 pm and was available to all women who had participated in the questionnaire from the first stage of the research. Invitations were sent by e-mail, post mail, and/or telephone. Women were also encouraged to bring along a friend or family to the workshop. A total of 11 women attended the first workshop, six of whom had participated in the questionnaire from stage one. The other 5 women were friends and/or family members of the women attending. The second workshop took place at the Elizabeth Fry Society, November 10 from 10 am - 1pm. This was a closed workshop and only women belonging to a parenting group at the Elizabeth Fry Society attended. Originally my research project had planned to run one community health workshop. However, at the end of my funding period with the BC Cancer Agency (November, 2010), I had a surplus of funds and decided at the last minute to run the same workshop with the Elizabeth Fry Society. A total of 13 women attended the second workshop. Some women, though, only stayed for half of the presentation. The structure and organization were similar for both women's cervical health workshops. Meals, snacks, beverages, and art supplies were supplied for attendees. Women requiring childcare for the workshop were given funds to assist in childcare 35 costs. Transportation was also made available to all attendees. Women signed consent forms upon arrival that allowed me to use hand written notes and/or tape recordings as well as art/creative projects created during the workshop as data for my research. I photographed each project created during the workshop and left the original pieces with their owners. Workshop Format The workshops began by attendees' creating a collage on construction paper with the provided supplies (magazines, stickers, paint, glitter, etc.) to share a little bit about themselves and/or their lives to everyone in the workshop. Once complete everyone was given the opportunity to talk about what they had made and what it meant. Women were encouraged to stay within their comfort zones of sharing and were assured they did not have to share about their work if they did not want to. The second activity focused on reviewing a brochure about HPV, cervical cancer and screening and was followed by a true- and false-game with prizes. A gynecologic simulator with cervical replicas, graciously lent to me by the Northern Medical Program, was used to help women visually locate the cervix and see what cervical abnormalities looked like. Women were given ideas and supplies for their art projects (generally collages) and spent the last several hours of the workshop creating pieces that reflected their chosen health theme. Women were encouraged to choose whatever theme they wanted for their art pieces. Suggested themes, however, included: 1) contributors to optimum health, 2) reasons to have Pap smears, 3) relationship with health care professionals 4) the story of your vagina (see Figure 2). At the end of the workshop, women who felt comfortable spoke about their pieces with rest of the group. 36 Figure 2 'Cervical doughnuts', supplies, art and brochures Women's cervical health workshop During this last stage of the research process, the data collected included photos taken of the collages that attendees made at the health workshops and an explanation (recorded using a Sony handheld recording device) about the meaning of the art created. Post test knowledge questionnaires were also filled out by women at the end of each workshop. 37 Chapter Four: Results The results section is organized by the type of data collected. I begin by presenting the data generated by the questionnaire (Part I) and then move to the qualitative findings (Part II) resulting from analyses of questionnaires, journaling, photo, and art projects. Part I: Questionnaire Demographics A total of 22 women aged 19-29 years old participated in the questionnaire (M= 24; SD = 3.8). The ethnic distribution of the sample group was as follows: 10 Caucasian women, 11 Aboriginal women and one Asian Canadian woman. All women were residents of the Prince George area. Most women (15) identified as single. Five were in common-law relationships, one was married, and one separated. Thirteen women were mothers - seven of whom were single parents (54%). Of all the mothers, nine had their children full-time, one had her child part-time, and three did not have current custody of their children. In all three cases, women's children had been removed by the Ministry of Children and Families. All three of these women indicated being active in the lives of their children in a variety of ways (e.g., supervised visits; helping with school projects). Formal Education, Employment and Financial Status The level of formal education completed varied between each woman, with most women having completed less than a high school level of education. Thirteen women had below high school education and nine had high school education or above. The formal education of the participants can be seen in Figure 3. 38 14- i:- ioOS E o 8- ,_ 1 E > 4- ;o-' -i :•• i Elementary school ' 1 ' Hgh school 1 ! 1 College ccitif cate I ! 1 Undergiaduate degree J 1 Maste s degiee Level of Edui ation Completed Figure 3 Women's levels of completed formal education In terms of employment, 13 of the 22 women who partook in this research did not have formal employment. Six had children and therefore worked full-time in their homes. Nine women reported having active public/paid employment, including positions in retail, administration, human services, finance, and large machinery operation. When asked about finances, most women (65%) reported to be in "extremely poor" or "below average" financial positions, while six women said "average" and two women said they were in "above average" or "excellent" financial positions (see Figure 4). 39 E E 3 4H exli erne y poo below average average above average excellent Self reported f nan lal status Figure 4 Women's self reported financial status Self-Reported Health and Stress Many of the participants (82%) reported to have "average", "above average", or "excellent" health However four women said they had "below average" and "extremely poor" health Figure 5 displays the distribution of women's health scores. o- i | 8- . I c= I ual partners Figure 9 Women's frequency of condom use and number of sexual partners Relations with Healthcare Whether women had regular family physicians, the length of time and comfort with their physician, and women's general trust with health care providers is now a topic to which I turn. Out of 22 women, 15 women said they had a regular family physician and seven women said they did not. The length of time spent as a patient with their family physician varied between one and 23 years (M= 9.64 years; SD = 8.1; Mdn = 7). The comfort experienced with family physicians also varied between each woman. In total, three women said they felt "extremely low" or "below average" levels of comfort with their family physician, while six said "average", 4 "above average", and three said they felt "extremely comfortable" with their family physicians. This data is summarized in Table 2 below. Lastly, women were asked, in general if they trust health care professionals. Fourteen replied "yes" and eight said "no". 45 Table 2. Women's Comfort with their Family Physicians Comfort level Frequency (%) "Extremely low" 1 (4.5) "Below average" 2(9.1) "Average" 6 (27.3) "Above average" 4(18.2) "Extremely high" 3 (13.6) Use and Comfort with Cervical Cancer Screening A total of 20 research participants indicated that they had participated in screening services at least once in their lifetime and two said they never had. The regularity of women's participation in cervical screening varied. Most women (11) said they were screened yearly. One woman said she went in "every six months" and four said "every two years". One woman said her last pap smear took place "too long ago to remember" and five women said they had "rarely" or "never" had a pap smear, meaning they had had participated in cervical screening only once longer than 3 years ago. The comfort associated with the last Pap smear women had received varied between each woman with six of the women having "extremely low" levels of comfort during their last Pap smear, five women's comfort level was self-identified as "below average", and nine women felt "average", "above average" and "extremely high" levels of comfort, respectively. Women's reported comfort at the time of their last Pap smear can be seen in Figure 10. 46 D E o S extremelylow below average average above average extremel/high Reported ;omfort of pap smear Figure 10. Women's reported comfort during last Pap smear Awareness about cervical health and formal education Women's awareness about HPV and cervical cancer was assessed using a series of 8 "true" or "false" statements about HPV and/or cervical cancer. Women were asked to answer "true", "false" or a use question mark (?) if they were not sure what the answer was. For analyses, questions were broken down individually and scored cumulatively. I was also interested in knowing if the level of education played a role in awareness, therefore scored each group separately (see below). Each statement is displayed in Table 3 with the frequency and percent of correct and incorrect responses received for each statement. 47 Table 3 Awareness about HPV and Cervical Statements Cancer Correct (%) Incorrect (%) "The only symptoms of HPV are genital warts" 12 (54 5) 10 (45 5) 'You can always tell it you have an STD without seeing a doctor" 17 (77 3) 5 (22 7) "HPV can have no symptoms" 10 (45 5) 12 (54 5) "Sometimes you can't tell if you have HPV" 9 (40 9) 13 (59 1) "Different strands of the HPV/different symptoms" 11 (50) 11 (50) "If your partner has had an STD check, no condom is OK" 16(72 2) 6(27 3) "HPV can cause cervical cancer" 11 (50) 11 (50)* "HPV can be asymptomatic" 9 (40 9) 13 (59 1) As seen in Table 3, half the participants knew that HPV can cause cervical cancer, while the other half were not sure of the relationship between HPV and cervical cancer In addition to this, women indicated low levels of awareness, in general, about HPV including its asymptomatic nature (59 percent incorrect) and the existence of various strands (50 percent incorrect) For the cumulative "awareness scores", each question answered correctly was scored 1-point, while incorrect answers were scored as zero. The cumulative awareness scores for the women who partook in this research ranged from 0 to 8 In total, five women answered all eight questions correctly Two women answered seven correctly, while 12 women answered four or less questions correctly The distribution of women's cumulative awareness about HPV and cervical cancer scores can be seen in Figure 11 48 Figure 11. Cumulative HPV and cervical cancer awareness scores The 13 women with below high school education levels of education, on average, answered 2.85 (SD = 2.5) questions correctly, while women with high school levels and above 6.44 (SD = 1.7), respectively. Thus, indicating that women with higher levels of formal education had higher levels of awareness about these sexual health topics. Pre- post workshop awareness scores This final section will talk about women's awareness scores before and after the community workshop. Women who partook in the workshop, but who had not participated in the questionnaire from stage one, were encouraged to answer an 'awareness about HPV and cervical cancer' questionnaire (with eight 'true'/'false' questions; see above) before the workshop started. Afterwards, all women attending the workshop were encouraged to fill out the same questionnaire before leaving. The scores from the both data sets, women from stage one (N = 8) and women whom attended the workshops (TV = 11), were combined (N = 19). Women's scores pre workshop (M= 4.39, SD = 2.89) significantly improved after attending (M = 7.16, SD - 1.61). These results 49 indicated that women's awareness about HPV and cervical cancer significantly improved after attending the arts-based workshop. Most tellingly the statement, "HPV can cause cervical cancer" was answered incorrectly by eight women pre-workshop. After the workshop one woman answered this question incorrectly. Section II: Qualitative Findings In total, 5 data sets from this project were combined for qualitative analyses. This included questionnaires, journaling assignments, photos taken by health group members, a recorded discussion during a women's health group, and art made by women who had participated in the health group and community workshops. This included hand-written and transcribed notes from the twenty-two women who had partaken in the questionnaire, three journals ranging from 14-28 pages in length, 52 photos, one recorded health group discussion, and 34 art pieces. Once the project was complete (November, 2010), coding ensued by combining the data sets and using a thematic approach (Braun & Clarke, 2006; Aronson, 1994) to generate themes, with particular attention paid to women's awareness about sexual health issues, relations with the health care system, and use of cervical screening. Women's stories were then pieced together to form a more "comprehensive picture of their collective experiences" (Aronson, 1994, para.21). For the purpose of validation, the findings from the qualitative data were reviewed and agreed upon by two of the women who regularly participated in the women's health group (Tracy and Catherine). The purpose of this research was to better understand women's lives and lived experiences and how, in turn, these may impact relations with and use of health care systems, in particular young and/or marginalized women's use of cervical cancer 50 screening. Secondly, I wanted to examine women's level of awareness about HPV, cervical cancer and screening. Using this framework, five relevant themes emerged from my data. These themes are: 1) her/stories9 of victimization, 2) gender-based feelings, 3) feelings of dis/empowerment, 4) life circumstances and 5) lack of awareness. Her/stories of Victimization In her book entitled 'Healing Wounded Hearts', Graveline (2004) says, "wounded hearts turn away from love because they (and others around them) do not want to do the work of healing necessary to sustain and nurture love" (p. 40). I feel this analysis could be extended to include women with 'wounded hearts', or her/stories of victimization, and their relations with the healthcare system. Particularly important to my research was examining if and how women's her/stories affected their comfort and use of intimate services, such as Pap smears. My expectation going into this project was that some women would have experiences with victimization given the 'Violence against Women' survey conducted by the Canadian Panel on Violence Against Women (1993), demonstrated that approximately 50% of all Canadian women had experienced at least one incident of sexual or physical violence, with 60% having experienced more than one incidence of violence (see also 'Measuring Violence against Women', Statistics Canada, 2006). However, the magnitude of abuse that emerged from women's collective stories both surprised and overwhelmed me. Over the duration of my research project, through questionnaires, health groups and community workshops (June - November 2010), I interacted with a total of 40 women, thirteen of which talked, wrote, or made art about their experiences with abuse. 9 This term generally refers to 'history' from a female point of view. 51 Women's stories of victimization were emotional, physical, and sexual in nature and ranged in time from childhood to current day. An example of childhood abuse was from Patricia10, who describes Pap smears as "the worst thing you can get done". She goes on to say: "My mom passed away when I was ten and we were just shipped up north, abusive foster homes, I ran away and I got pregnant at 14.. .1 never knew anything before that so I rolled into this world, became a mother, then being a child in care myself and having a baby it was hard to find foster homes for me with my baby" (Patricia, June, 2010). Similarly, Petra talked about how episodes in her childhood made her feel distrustful of those around her. Although Petra said she had been with the same family doctor for about 10 years, she says that trust is "sacred" and that she doesn't trust anyone, "not even my own doctor". Petra was sexually molested when she was seven years old and talks about how this has contributed to her discomfort having Pap smears: "because I was molested when I was younger, my discomfort has got a lot to do with somebody just touching me" (Petra, June, 2010). Sharon also talked about a traumatic childhood. She ran away from home at 11 years old because of the physical and sexual abuse in her home and has lived on the streets and in shelters ever since. At 14 years of age, she began "working the streets" and said she had a "long history of addictions". She describes trust as "loyalty...just believing in someone...having faith", of which she says she has "very little" of. She says, "I've learned the hard way, on the streets there is really nobody to trust. I trusted a lot of people in my life and a lot of shit has happened to me" (Sharon, 10 Women who participated in the questionnaire, health group, and workshops created their own pseudonyms. These are used throughout the qualitative section. 52 June, 2010). Consequently, Sharon also says that she does not trust health care professionals. The last Pap smear that Sharon received was during a routine examination at a treatment centre she had been staying in, which she says would have been "much more comfortable" if she was able to bring a friend in with her, something she said was declined by the practicing physician. Simone told a similar story. She experienced severe victimization in the form of "repeated rapes" throughout her life: "Trust is hard. I trust nobody. I don't trust anyone but Chris, my partner". She goes on to say that if her partner was able to come in the room with her during her Pap smears, which she had been told he was not, she would feel "more comfortable" (Simone, July, 2010). Women in the health group echoed similar traumatic experiences in their journals. Catherine wrote about how she had been sexually abused as a child and Natasha about a recent physically abusive relationship. When writing about her sexual abuse, Catherine (2010) says: "When I was younger I was sexually molested by a family member (nobody knows about this). I was really young. I was younger than 7 years old. I am not sure how old I was or when it started or how long it went on. I was always too scared to tell anybody and when I tried telling my older brother he went to tell but I called him back immediately and told him I was joking. So nothing even happened to him and still all these years that have passed nobody knows. Now I know I should have said something but I couldn't. I just hope that it didn't happen to somebody else. Somebody who couldn't handle it" (p. 7). Natasha wrote about her past relationship with a man who had been physically abusive towards her, severely enough so that she was hospitalized as a result on two occasions 53 (Natasha, July, 2010). Talking about her partner and how she strived towards a future without him, she wrote: "I seriously thought of my partner as God, like he ruled me. That is how I thought love was. Well I thought it was and hoped, but things change once you can see again, when you're not blind anymore and you grab onto something far away that you are interested in and that's positive and you love and don't let go, mine is of course my children and my dreams to go to school.. .1 can forgive but I will never forget" (p. 3). During a health group Natasha, who is extraordinarily shy and reserved, told the group that she had a hard time talking to her doctor saying, "asking him (the doctor) questions makes me feel really uncomfortable" (Natasha, July 2010). Cumulatively, women expressed profound feelings of mistrust towards most of the world, including the health care system, stemming from past and/or current victimization in a variety of forms. They talked about how these feelings of mistrust affected their relationships with those around them, including health care professionals. Cervical cancer screening was viewed as a particularly intimate service and women who felt distrustful due to past and/or present experiences with victimization expressed feeling much less comfortable and less likely to use such services. Having rapport and trust of health care professionals was an important determinant in women's comfort and use of cervical screening services. During the first women's health workshop the theme of her/story of victimization again emerged in art that women produced. For example Patricia, an attendee from the first women's workshop, made an art piece entitled "the story of my vagina" in which while she talked about the "beauty" of vaginas she more notably spoke in great lengths 54 about the trauma and hurt she and her body had endured as a results of working in the sex-trade industry (see Figure 12). Figure 12. "The Story of my Vagina" (Collage, 12" x 15", multi-media on canvas), by Patricia The blue sheet attached to the canvas is from a song entitled, "Stilettos to Moccasins11". This song was given to me at a women's health workshop I had presented the previous year by a women attending. When presenting her art to the group, Patricia pointed to the money and said, "...the street is where the money is at" but then went on to point to the photo of the woman and said "this is me, realizing how much I was hurting myself (Patricia, October 2010). Patricia then bravely proceeded to read the lyrics on the canvass aloud for everyone in the workshop: I survived through the pain Many emotions like waves Laughing and crying again and again [long pause; crying] Honesty, strength and devotion [pause] This song represents findings from a research project entitled, "Aboriginal women drug users in conflict with the law: A study of the role of self-identity in the healing journey". More information about this research can be found at: http://www.addictionresearchchair.com/creating-knowledge/national/ 55 Showering gifts of hopes to reclaim Walking the streets dragging my heart Wandering with my head held down in shame When and how did my family fall apart? Who am I, what is my name? Surviving the street lost and alone I started a journey to find my way home From stilettos to moccasins Our spirit dances within On our way to resolution We find out peace And this is who I am Broken barriers and new discoveries My spirit I now reclaim Coming home to who I am Taking honour in my name [long pause; crying] No longer a prisoner lost in this world Look within my shell To find that pearl From stilettos to moccasins Our spirit dances within On our way to resolution We find our peace And this is who I am. Patricia directly associated the 'story of her vagina' with the traumas that she endured as a sex-trade worker. The lyrics of the song attached to her canvas talked about selfdestructive behaviours and the importance of finding and being proud of her identity, all of which she seemed to deeply connect with. A photo that Catherine, a health group member, took for her photovoice project was entitled, "Heart", expressing women's vulnerability and defense mechanisms in the sex-trade industry. In her journal she wrote about this photo: "women who work the streets become hard while still needing love and affection (and always looking for the affection they crave). They have to be tough. They wouldn't survive if they weren't" (Journal entry, 2010, p. 25). Catherine photographed and journaled about the "bad date boards", a bulletin board in the PG New Hope Society for women in the sex-trade 56 industry to warn other women about bad dates in the community (see Figure 13). She says: "Bad dates happen. They are horrible...as if these women haven't been through enough! The bad date reporting box allows women to anonymously share their experiences with other women so they know what to watch for or who to watch out for.. .the bad date bulletin and reporting board is a long list of bad dates which have been reported to the police...think of how many women will go without reporting what has happened to them" (Journal entry, 2010, p. 27). Figure 13. "Bad Date Reporting Box" (photograph 4" x 6"), by Catherine Catherine also photographed individual stories that women in the sex trade industry had told about bad dates. One woman had documented, "March 25, 2010 - He grabbed my throat. He was groaning meanly when choking. Threw me in the vehicle, punched me tremendously and threw me out all in 10 minutes". This was only one of 12 stories that were told on this board by women working in the sex-trade industry. Lastly, Catherine took a photograph entitled, "man to monster", depicting the toxic evolution that some women's 'dates' undergo (see Figure 14). 57 Figure 14 "Man to Monster" (photograph 4" x 6"), by Catherine. In her journal she says, "When women meet their 'dates' he is a normal man. He is nice but slowly turns. He gradually becomes meaner, more demanding and even violent. The man that was so kind to start with turns into an unrecognizable monster" (p. 19). There was a broad agreement among women that 1) women were commonly victims of abuse in a variety of forms, 2) these experiences have enormous impact on women's formation of trusting relationships, and that 3) cervical cancer screening, due to its highly intimate nature, requires trust and is used less often and with much less comfort when there is a lack of trust. Two women offered insight into how screening could be made more comfortable: having the ability to bring in a trusted friend or loved one would help increase their comfort levels with cervical screening. Due to the fact that a large proportion of women have experienced victimization, these data emphasize the importance of accounting for her/stories of victimization for health professionals when providing services. Continuity of care is an important aspect for women in their use of cervical cancer screening and a way in which they may be able to build trusting relationships and ultimately feel more comfortable with their health care professionals when having Pap smears (or any other highly intimate services). 58 Gender-Based Feelings The second theme that emerged from analyses of my data was that of genderbased feelings about the health professional performing Pap smears. This theme emerged from all five of my data sets. Of the 40 women I worked and collected data with, a total of eight women explicitly expressed their preference for and/or increased comfort with female health care professionals, versus male, in the context of cervical screening appointments. The levels of discomfort that women reported with male health care professionals ranged from slight discomfort to a discomfort severe enough that four women who partook in this research said they refused to attend a Pap smear unless it was with a female. For example, Ann said during a health group that: "So many women that I know don't go for Pap smears because of the lack of female doctors. For my sister it has been six years since she's gone for a pap because her doctor says, well, we aren 'tjust going to refer you to a gynecologist, like there has to be a reason to be referred otherwise your GP can do it, and it happens to be a man. Women are lagging for so many reasons and some of them are just not in their hands really" (Ann, June, 2010). Similarly, Ann told the health group that she was 2 years overdue for having a Pap smear because of her extreme discomfort with male physicians: "There's a problem right now with me and I need to wait because there's not a female doctor" (Ann, June, 2010). Mickey says that she "does not trust anyone" and says that the last time she had a Pap smear she was extremely uncomfortable because it was a male doctor that she did not know: "If it was a female doctor I would have been much more comfortable. We need more female doctors to feel comfortable" (Mickey, July, 2010). Cassandra mentioned that 59 the last Pap smear she had was very uncomfortable. When asked what made her feel uncomfortable, she said, "it hurt...not painful just really, I don't like it when they open up it's like ouch, ouch...it was a man too! And I don't like men seeing me down there (Cassandra, August, 2010). Gender-based feelings were also expressed through the art that women made at the health workshops. For example, Belinda made an art piece about the bad and good sides of having Pap smears (see Figure 15). Talking about her art she says: "I did the bad side or dark side to having doctors and Paps [pointing to the black side of the canvas] and then I did a baby and put my sons name on the good side of why I go for Pap smears...it's scary when you go in and you see a male doctor and you're thinking all this stuff and what not, it's kind of scary. It really depends on if it is your doctor and if it's a girl doctor" (Belinda, October, 2010). Figure 15. "The Two-Sides of Pap Smears" (Collage, 12" x 15", multi-media on canvas), by Belinda. There was broad agreement among many of the women who partook in this research project that the gender of the physician or health care professional performing Pap smears made a difference to both their use and comfort. Ann expands upon this, saying that 60 "there are women who have been abused and they have to see some strange man or some man, you know, who they see maybe once every couple months for whatever reasons, you know, in a very personal way" (June, 2010). Women felt that having a woman perform the Pap smear would increase comfort and thus use of services. This was particularly the case for women with her/stories of victimization and those who felt vulnerable and largely mistrustful of men and/or the health care system. Feelings of Dis/Empowerment The third theme that emerged was feelings of dis/empowerment by women who partook in this research. To 'disempower' is to, "remove confidence from someone to do something" (Wiktionary, 2011). Women expressed feeling disempowered or "disadvantaged by the way power relations shaped their choices and opportunities" (Luttrell & Quiroz, 2007, p.4) in their health care. Specifically, women described events in which they felt ignored by their physicians while presenting concerns and/or not listened to about options pertaining to their treatment. In addition the way that health care professionals made some women feel were problematic in terms of the woman accessing services. Cadence, a 28 year-old Aboriginal woman, spoke about her experience with a health care centre. She "kept trying to talk to them [the nurses and doctors]" but says the health staff proceeded to ignore her inquiries, input, and requests about her pregnancy: "They wouldn't even try to help or nothing" (Cadence, June, 2010). Deb works as a survival sex-trade worker and has a long history of addictions. She told a similar story. She felt her physician did not listen to her and she talked about stereotyping in the health care and how if affects women's care: 61 "Dr. did not register, like I was always there for one thing or another and he wasn't really listening to me, he was just figuring he knew. Not all doctors know everything but, you know, your body knows when there's something wrong...there are so many junkies in this town, it's almost like a lot of these doctors now are labeling people so no one wants to give anyone a hand, right?...I'm trying to heal myself and get places, but I can't if my physician is not standing behind me...I notice a lot of girls on the street have a fear of speaking up, I know that because I've seen it so many times" (Deb, July, 2010). Patricia also says that the trust she has in her family doctors is "extremely low" due to the fact that she does not feel they listen to her. Patricia said that during her most recent appointment she had requested to have a conversation with her physician about decreasing her anti-depressant dosage. Her physician, she stated, refused and insisted her "you need to be on them" (Patricia, June, 2010). As a result, Patricia took herself off the medication and had been experiencing adverse side effects such as extreme anxiety at the time of the interview. Tracy also wrote about her experience with a nurse at a public health unit saying she felt "judged" and "uncomfortable" (Journal entry, 2010, p. 13). Interestingly, Tracy was not particularly bothered about what the nurse said, but rather noted how the encounter had made her feel. For some women, feelings of disempowerment extended beyond the health care system to society in general. Sharon describes this by saying, "I've been clean and I've been trying to do what society wants me to do and every time I try, I get shot down...I just...I just ended up using again, because it's like they want me to fail again (Sharon, 62 personal conversation, June, 2010). Catherine also talks about this by submitting a photo entitled, "brick wall" (see Figure 16). Talking about this photo in her journal, she says: "The women [at Prince George New Hope Society] are constantly hitting a brick wall. They are not accepted by all people. There are so many barriers for these women to overcome before they can even consider moving ahead in life. People don't take time to listen to these women" (Journal entry, 2010, p. 36). Figure 16. "Brick wall" (photograph, 4" x 6"), by Catherine Melissa, a 21 year-old woman who partook in the first women's health workshop, made an art piece about how empowerment would make Pap smears more comfortable (see Figure 17), she says: "I think the primary thing is empowerment, like the doctors and the medical system should empower us as women and we should empower ourselves and each other as women. We still face so many issues in our society and we have to give ourselves that power, especially when it comes to our health because no one can force us - we have to do this for ourselves because it's so important to take care of ourselves" (Melissa, October, 2010). 63 Figure 17 "Empower Flower" (Collage, 8" x 10", multi-media on canvas), by Melissa Tracy, a regular attendee of the health groups, made an art piece at the women's health workshop (See Figure 18) and also talked about how having increased awareness made her feel empowered and more comfortable to have a Pap smear: I started off with the first part being embarrassed and a little green guy is going "uhm I don't know". Then there is a girl up there...looking down scared and the squiggly lips and really uncomfortable talking about it and then it moves into the middle where it's shaped like a vagina. I put in there some glasses and a woman just seeing...noticing that yourself matters and being embarrassed is kind of no excuse to take control and have power and I put a little bit of flowers to show I was slightly comfortable...and then it moves over to here where I feel empowered and comfortable and on the bottom is says "care free" and there are bigger flowers" (Tracy, October, 2010). 64 Figure 18 "Take Control Have Power" (Collage, 12" x 15", multi-media on canvas), by Tracy I think that what women are saying is that feeling empowered, or able to make decisions, about their health and health care, in particular with intimate services such as cervical screening, was important to them. Women expressed wanting to feel in charge of their bodies and decisions pertaining to. Most importantly, increased awareness about Pap smears was reported to make women feel more comfortable with and willing to have them. Negative interactions with a health care professional commonly resulted in lowered use of screening services and/or lack of adherence to medications. This illustrates part of what this thesis wished to examine, how the healthcare system makes women feel and whether this made a difference in women's awareness about and use of cervical screening services. For most of the women involved in my research, the answer was "yes", the way that women felt mattered. Life Circumstances The fourth theme that emerged from my data sets is that of life circumstances. Women faced challenges in accessing and using health care services, including lack of transportation, parenting and childcare. Of the 22 women who filled out the 65 questionnaire, seven said they did not have access to reliable transportation. For the first community health workshop transportation was provided for five women. There were 11 mothers who partook in the questionnaire. Seven were single parents, three of whom said they did not have reliable and/or trustworthy childcare for their children. Women talked about how these life circumstances impacted their eveiyday lives, access and use of health care services in general. Having access to reliable transportation is an extraordinarily important issue, in particular for women with children. Tracy, a mother of two young children who relies on public transit in Prince George, talked about how the transit system is unreliable for her and her family's needs. She says that the "buses don't run often enough, early or late enough, or have enough routes" (Tracy, November 2010). As a result of not having reliable transportation Tracy says that her children aren't able to participate in many extra curricular activities because of the impracticalities of using the transit system. Accessing health services was noted to be considerably difficult for women during harsh winter conditions, as many women walked or accessed public transit. When talking about issues pertaining to women's sexual health, Mickey, a 25-year-old Aboriginal woman and single parent to three children, said that "transportation is one of the biggest issues", or barriers, (Mickey, June 2010) she faces in access to sexual health services and education. Many of the women who partook in this project were mothers and thus this identity was expressed through much of the art that women made (see Figure 19). Further to this, parenting stress was common for many of the women. Tracy, a health group member, had her first child when she was 15 years of age. For her photovoice project she 66 took a photograph of herself feeding her baby in the middle of the night. She entitled the photo, "Emotions - The 3 AM crying" and wrote about it in her journal saying: "Having a child so young is hard. To deal with emotions of your own at 15 years old, crazy ups and downs, as well as a 1 year old crying and all his emotions is constant stress. I feel I get stressed very easily maybe because that part of me is still not fully developed" (2010, p. 8). Figure 19. "There's no Better Feeling than holding your Baby Close" (Collage, 12" x 15", multi-media on canvas), by an anonymous participant Ann, an attendee of the health group, and single parent of three children all under the age of six years, also says she feels enormous pressures. In addition to parenting her children alone, she does not receive any financial support from the children's father. As a result, during the research project her basic home services including telephone and power were disconnected. She also talked about how she had been given an eviction warning from her landlord, as she had not had the finances available to pay her rent on time (July, 2010). Largely in part of Ann's life circumstances and the associated stresses, she was only able to attend two health groups and withdrew from the remainder of the research 67 project. The second health group Ann arrived late, shaky and close to tears. She told the group that she felt like she was "drowning" in responsibilities (July, 2010), In response to Ann's stories and to reflect on how she was feeling I made a collage during the health group entitled, "The Show Must Go On" (see Figure 20). I used my collage to talk about my own experiences in attempts to help normalize some of the overwhelming feelings Ann was experiencing as a parent, let her know that she was not alone, and that it was okay to ask for help. Figure 20. "The Show Must Go On" (12" x 15" collage), by Virginia At the end of the group, attendees had a chance to talk about the collages they had made. When it was my turn to present I explained my collage to the group and said: "Having children or the 'labour of love' [pointing to the top right] can be painful, and exhausting, and ultimately lead to a mental breakdown [laughing]. I know this because I've been there...who am I kidding, I am there right now! My kids are just older now so it's become a little bit easier, I guess. There are so many demands on me at times that I feel like this women [pointing to the left] in my canvas...like I'm drowning...like I can't breathe. Sometimes it feels like I'm 68 totally alone in feeling this way. But, you know, the more women I talk to...the more I realize that in a way, we all sort of feel this way at times. I'm not the only woman in the world to feel overwhelmed! The important thing to know is that we are not alone and sharing our experiences can really help. I put "the show must go on" in the middle, because sometimes I feel like I'm drowning and with kids, in particular when you are a single mom, you have no choice sometimes but to keep the show going with a smile on your face. But here's the thing, we CAN stop the show, and we are allowed and should take time for ourselves. Most importantly, we can ask for help when we need it" (Virginia, July, 2010). Chantal, a mother of four children, talked about the stress associated with parenting saying, "I haven't had a good break for a long time, Danny, my husband took off on me, this is the fourth time he did this to me...that's why my kids were taken away overnight...this is what stress is to me" (Chantal, August, 2010). Chantal said that overall she would feel less stressed and much healthier if she had more time for herself and more support for parenting. She was very excited to attend the art workshop so she could take some well-needed time for herself, away from her family. Unfortunately she phoned an hour before the workshop, very upset to tell me she could not make it because her baby sitter had not shown up (Phone conversation, October, 2010). During the questionnaire, unreliable childcare was something Chantal said she experienced frequently which often resulted in her not having "enough break time" for herself (Chantal, August, 2010). I think that what women were saying is that transportation, parenting, and childcare are important in their ability to attend or participate in a plethora of activities including health care education and services. Life circumstances that were particularly 69 challenging for women and led to lowered participation in this project were stresses associated with parenting such as lack of finances and childcare. My research aimed to examine barriers that vulnerable and/or young women faced in access to and use of cervical screening services. My results demonstrated that social determinants such finances played an important role in women's ability to take a break from parenting and access to reliable transportation. As a single mother for many years with two young children, I had a vehicle, which made access to health services much easier than many women. However, I did not always have the energy and patience it took to bundle up my young children and wait at a health clinic to have a Pap smear. Having access to reliable, trustworthy, and affordable childcare, therefore, is extremely important to increasing cervical screening services use for young and/or vulnerable women with young children. Lack of Awareness The last theme that emerged was lack of awareness about HPV, cervical cancer, vaccines and screening. All of my data sets demonstrated that women who partook in the research project, as well as their friends and family, had somewhat low levels of awareness and expressed confusion about the sexual health issues mentioned above. This finding was echoed in the baseline assessment (or questionnaire) in this thesis, in that the 'Awareness about HPV and Cervical Cancer' section had relatively low overall scores. In the journals provided to the women in the health group Ann wrote: "I want to learn more about HPV and women's health because it isn't something that I have talked about with anybody, so I don't understand much about HPV or any other things about sexual health" (Journal entry, 2010, p. 1). Similarly, Tracy wrote: "One of my hopes with this project is 70 to learn a bit more about women's health and wellness. Just by the first meeting I realized how much I didn't know" (Journal entry, 2010, p. 2). During a journaling assignment about experiences women had with talking to friends and family about these sexual health topics, Catherine wrote that most people she talked to were not "shy or uncomfortable talking about HPV or cervical cancer" (p. 13) but overall had very limited understanding about HPV and the vaccine. She wrote, "This one woman I talked to has been looking into getting vaccinated...but was under the impression that it [the vaccine] covered more than it really does" (Journal entry, 2010, p. 13). Another woman that Catherine talked to, she wrote, "had no idea what HPV was and didn't think it was contagious" (p. 16). Tracy also wrote about similar experiences. Women she talked to also had very little information about HPV, did not know the reason behind having Pap smears, and felt confused about the vaccine. Summarizing her experiences, Tracy wrote: "Most women didn't even know the purpose of a pap smear. Most women only get checked because they are told to by doctors. The importance of the Pap smear is not even discussed. Also the HPV vaccine that's available.. .most parents didn't even know what it's for or what it does" (Journal entry, 2010, p. 9). During one health group, misunderstandings about HPV were also expressed by some of the attendees, Tracy said: "I never heard anything before reading about it now, this stuff. You don't hear it advertised that men carry it at all" (Tracy, July, 2010). During the same group meeting, Ann said she had talked to her family and stated, "Pretty much every woman that I spoke to, like there are a lot of women in my family that I spoke to about HPV and all that, knew nothing about it (Ann, July, 2010). Catherine described a 71 conversation to the group that she had with a male friend, she says: "Ok, when I asked him about HPV, he's like ' / don't know anything', and I said, 'what about cervical cancer?' He said, "Well mostly I think it occurs in women" [Group Laughter]...he was serious too! I didn't laugh at him in his face or anything" (Catherine, July, 2010). All joking aside, women who partook in this research commonly expressed a lack of awareness about cervical health, in particular HPV, the relationship of HPV to cervical cancer, the purpose of cervical screening and vaccines. In particular, the asymptomatic and contagious nature of HPV and its relationship to cervical cancer was misunderstood. The HPV vaccine was a topic that women indicated needing more information about. Having increased awareness about these sexual health topics influences health behaviours and use of cervical cancer screening services. Providing adequate awareness about HPV, cervical cancer and screening, in my opinion, can be extraordinarily influential to increasing the use of these services for young and/or vulnerable women. Cumulatively, women expressed how her/stories of victimization, gendered feelings (commonly a result of victimization), dis/empowerment (i.e., inequitable relations with health care professionals), and life circumstances (i.e., lack of financial resources and/or support) all impacted women's use and comfort of cervical cancer screening. Importantly, there was a general agreement among women that the way a health care professional made them feel contributed to their comfort and use of such intimate services. In the context of my research, continuity of care mattered to women. Women were more likely to have higher levels of trust and comfort with health care professionals whom they had seen continuously and felt respected by. Lastly, women 72 expressed that having increased awareness about HPV, cervical cancer and screening made them feel empowered, thus increasing comfort and use of Pap smears. Interestingly, when I look at both sets of data I noticed that factors that have been identified as social determinants of health (e.g., formal education, finances, childcare) made a difference in women's awareness about and use of cervical screening services. For example, women with low levels of education also had low levels of awareness about HPV and cervical cancer. Generally women said that their health status was closely associated to finances and stress. Feeling comfortable with, trusting of, and empowered by health care professionals was important to women and subsequently fairly indicative of women's use of health care services and particularly Pap smear services. The combination of quantitative and qualitative data formed a complex picture of why some women using cervical screening services regularly. Her/stories of victimization were common and played a particularly poignant role in women's lives and relations to the world. It was also not uncommon that as a result of victimization women prefer a female versus a male health care professional to perform her Pap smear. Lastly, my data demonstrated that women's awareness was fairly low about HPV and cervical cancer with correspondingly low cervical screening use. All of these issues, I argue, are extraordinarily important in women's use of cervical screening services in Prince George. 73 Chapter Five: Conclusions The impetus for this research arose from my overwhelming concern for young and/or vulnerable women, whom health literature demonstrates to have an increased incidence, mortality, and morbidity associated with cervical cancer. In order to address these concerns, the aim of my research was to examine young and/or vulnerable women's awareness about HPV, cervical cancer and use of cervical screening services in Prince George, B.C. My research was intimately guided by my own experiences and location in reference to these questions. The research was positioned within feminist and anti-racist methodologies, intersectionality theory, and social determinant of health perspectives. These were fundamentally the voices heard (e.g., young and/or vulnerable) in the research, the approaches used (CBP and art research methods), and how I grappled with and made sense of my findings. My findings were derived from data gathered through three stages of research. The three steps of this project aimed to 1) understand more about women's lives and lived experiences, 2) establish rapport and 'plant the seed' of awareness about HPV and cervical cancer and 3) raise awareness in the community using arts-based cervical health workshops. The duration of the research project was 6 months (June - November, 2010). Data collected for this project included questionnaires, journals, photos, one audio recording from a health group and the art made by women involved in the health group and community workshops. Women's personal histories and various health determinants were explored in relation to women's awareness about, comfort with, barriers and use of cervical cancer screening services. Last and most importantly, this project used arts-based and peer-driven interventions to raise awareness about HPV, cervical cancer, and 74 screening to women in the Prince George community. This, ultimately, was found to be successful; women's awareness increased following the health groups and workshops. My research results demonstrated that determinants such as formal education, and socio-financial statuses mattered in the lives of women who partook in this research in relation to health and wellbeing. Women's financial statuses were fairly indicative of their self-reported health and most women experienced regularly high-levels of stress in their lives, in particular regarding finances. These determinants also played important roles in women's awareness about HPV and cervical cancer, and their comfort about and use of cervical screening programs. For example, women with elementary school education or less had much lower awareness about HPV and cervical cancer than women with high school education or higher. Feelings of discomfort and a refusal to regularly attend Pap smears for women were commonly associated with low levels of awareness, discontinuity in health care providers and her/stories of victimization. Largely resultant of her/storical traumas, women said that accessing intimate services such as Pap smears was difficult. Using a community-based participatory research approach was largely successful for my project. Women responded positively and were excited and interested in learning about these sexual health topics. They were also interested in teaching others about what they had learned. Despite the challenges associated with community-based research, collaboratively working with young women in the community was one of the key contributors to the success of this project. The women who attended the health groups and later led the workshops were my teachers and vital contributors throughout the project. The challenges I experienced with this project included scheduling around the 75 lives of four women and six children, finding physical space to simultaneously accommodate women and their children and finding transportation for women to attend the monthly health groups. The health groups were commonly re-scheduled due to attendees' life circumstances (e.g., sick child, over-time work). It was important for me to be flexible and accommodating to ensure that most women could attend. Using an arts-based approach to raise awareness and explore women's stories proved to be advantageous. The connection between health and art was a very important finding of this research. In the health groups, a general consensus among attendees was that engaging in the creation of arts "felt good" (Journal entry, Natasha, pi3). Further to this Natasha said, "now that I've tried art I really like it...some things are worth trying for your health and wellness" (p. 14). Only one woman involved in the research said that she engaged in creating art regularly before the workshop. At first, many women showed apprehension, largely because it had been so long since they had created anything (often childhood). Despite this, it took very little time before most women were pouring paint, cutting pictures, sorting through bins of accessories and picking out the perfect colored sparkles. Both workshops ran overtime because many of the women wanted to finish their pieces before they left. As a result, women's awareness levels about HPV and cervical cancer were higher after engaging in health groups and workshops. This was demonstrated in the post awareness scores of women who had participated in the workshops. Women also expressed feeling more comfortable with cervical screening as a result of things they had learned in the health groups or workshops. My understanding about women's lives and lived experiences also increased through this process. The subjects of the art pieces created by women who partook in this research ranged from 76 favourite shoes and travel destinations to heart-wrenching stories about extreme victimization and vulnerability. Many of the women asked if the arts-based workshop would be offered again. They wanted to take part again and bring friends. The response from the Elizabeth Fry Society about the workshops was similarly positive: "Your research is very important and you are very informative. The idea of doing the presentation through art is empowering to women, it's fantastic! This has been an awesome experience and opportunity for our girls. Thanks, Elizabeth Fry Society staff (Personal correspondence, November, 2010). I received a text message several weeks after the health groups ended from a member saying, "Hi Virginia, just wanted to you to know I was thinking about you and wanted to thank you for everything! Being involved with this project was such an awesome experience" (Natasha, Personal conversation, Nov, 2010). This project demonstrated that arts-based health awareness workshops were warmly welcomed, attended, and wanted by women and organizations in the Prince George community. The lives of women are complex and multifaceted; therefore there were a plethora of mediating factors to consider in the exploration of women's use of cervical screening services in Prince George. Cumulatively, women who partook in this research noted the following aspects to play a role in their use of Pap smears: • Awareness about HPV, cervical cancer, and screening • Her/stories of victimization • Access to female health care providers • Continuity of care • Access to transportation and reliable childcare 77 In large part, this research project was about providing equitable access to important information about HPV, cervical cancer and screening. Common misunderstandings arose about FIPV, and women expressed that they wanted to know more it as well as the vaccine. The fact that HPV is asymptomatic, contagious and highly prevalent came as somewhat of a surprise to many of the women who participated in this research. Having access to information in an environment that women deemed to be safe encouraged women who usually would not normally ask questions (e.g., Natasha), to speak up. Natasha expresses this in her diary saying, "I hope that we all get a sense of fulfillment, lots of useful information, are able to be open and have good communication" (p.l). Engaging in making art was a practice that helped women talk about and, consequently, make sense of intimate issues such as sexual health and screening. In fact, four women chose to do a story of their vagina for the art project, indicating a comfort with talking about their sexuality. Providing a comfortable environment and empowering women by providing information and options were all vital to increasing women's understanding about health, thus important pieces in this project. Having increased understanding about the reasons why women should have regular Pap smears made many of the women who partook in this research report to feel more comfortable and empowered about having a Pap smear. Therefore, the workshops featured a brochure with a list of places offering sexual health care including Pap smears, thus encouraging women to check out other clinics where they may feel more comfortable (e.g., OPT sexual health clinic, Prince George). 78 If I had a Million Dollars: Recommendations Results demonstrated there is a lack of awareness and appropriate and/or accessible sexual health services in Prince George for some women. Given the positive community and participant feedback as well as the increased awareness resultant from the intervention, an investment in prevention and education about these sexual health topics using community- and arts-based formats would be a fiscally advantageous solution for the health care system. The results of a literature review about intervention strategies in countries with universal health care frameworks and national cervical screening programs demonstrates that many smaller-scale intervention strategies exist, however there is a major gap in the literature pertaining to the evaluation of these programs on the longitudinal behaviours resultant from the interventions. Overall, within the literature many more recommendations than actual long-term empirically supported interventions exist about cervical cancer. Both Canada and Australia have some of the lowest cervical cancer incidence and mortality rates in the world. This is largely attributed to the universal health care framework and nationwide cervical cancer control programs that exist in these two countries. Despite this excellent work in reducing rates of cervical cancer, certain women in both countries are disproportionately afflicted with this disease. These women include, racialized women and socially/economically vulnerable women. Strategies that integrate linguistic and cultural considerations have proven successful in increasing awareness about cervical cancer screening for a wide spectrum of women including, Filipino American women living in Los Angeles, where group awareness programs with friends and family were offered by Filipino health educators (Maxwell et al, 2003), Chinese 79 women in Ontario, where group sessions and resources were offered bilingually and in a culturally relevant manner (Larsh, in Canadian Partnership against Cancer (CPC), 2010), and Mi'kmaq women, where a video about preventing cancer of the cervix and booklets were created and available in the Mi'kmaq language to women living in rural and remote communities near James Bay with traditionally low cervical screening rates (CormierDaigle, in CPC, 2010). Similarly, research by Kagawa-Singer and colleagues (2005) demonstrated the effectiveness of community based or ethnic specific clinics for Asian American women (AA), in particular women living in low-income, whom were found to have improved cervical screening rates compared to other AA women nationally. The authors demonstrate that ethnic specific clinics make an important contribution to improving cervical screening rates for patients, particularly those who were dually marginalized. Research overwhelmingly demonstrates that factors such as language and culture are extraordinarily important to consider in raising awareness about and subsequent use of cervical screening. Therefore, any strategies created and implemented at a local level would need to integrate cultural and linguistic considerations to development. Community involvement has also demonstrated to be successful in assessing the needs of women, raising awareness about and normalizing cervical screening, particularly among hard-to-reach women. For example, a project in Boston funded by the Breast and Cervical Cancer Coalition (2003) involved African American women from a wide range of communities in the assessment of cervical screening needs. Listening to the community involved forming a coalition with a "broad representation of community members, ranging from women to academic researchers" (p. 339). The results of using a 80 community project was that underserved women were able to voice concerns about barriers to their care, including lack of awareness and cultural competence among health care providers. Bigby and colleagues (2003) say that interventions to increase cervical screening uptake must address women's realities. Similarly, an intervention entitled, "The Forsyth County Cancer Screening Project", used both clinic in-reach strategies (e.g., posters and promotional materials) and community outreach strategies to increase awareness about and use of screening (Paskett, Tatum, D'Agostino, Rushing, Velez, Michielutte et al., 1999). This project was offered over a 3-year time period with lowincome housing communities in North Carolina and involved local women in the identification of barriers to screening and community intervention strategies including monthly awareness classes, community parties, and church programs. Findings indicated that screening rates in the intervention city increased (73% to 87%) while declining during this time period in the comparison city. At a local level, this research demonstrates the importance of and success from engaging the community and involving women who are at the highest risk from this disease. In Australia, a successful project involving community women entitled, "Cancer Action in Rural Towns (CART)" took place in 20 rural towns in Australia and aimed to evaluate the effectiveness of an intervention, or community action program, to increase rates of preventative and screening behaviours related to breast, cervical, smokingrelated, and skin cancer (Hancock et al., 2000). For the cervical health intervention portion, a facilitator and community liaison were hired to work once a week in each of the cities to provide support, resources, outreach, and events for 6 months. Media releases and cancer awareness seminars were offered in each city and resources such as pamphlets 81 and posters were created for and distributed throughout each community. A community committee was also formed in each town, with a small spending budget, to oversee the project, guide decision-making processes and ensure the project was reflective of community needs. This project demonstrated to be an effective way to provide public awareness and significantly increase cervical screening rates over a three-year period in all 20 cities (pre-post and compared to control cities). Community involvement in policy planning and intervention strategies is extraordinarily important resulting in services that more accurately reflect the needs of local individuals. Health care services in Canada and Australia are technically 'universal' and therefore available to all citizens free-of-charge. Despite this fact screening services are not accessed equally by all women. These women represent a vulnerable population and it is they that need to be included in the larger conversation to have their voices heard when designing and implementing policies and programs. Projects that are collaborative, that listen to a community will have a better chance of succeeding. Research demonstrates that a wider variety of voices are needed in planning, programming, and delivery of health care, particularly intimate services such as cervical screening for underserved women. It is important to recognize that although screening technologies exist that can mitigate the risks or chances of developing cervical cancer, there are still systemic issues that need to be recognized in order to achieve this goal. A review of the literature revealed that there are important factors that need to be considered to successfully engage and attract under screened women. These include providing linguistically and culturally appropriate information and services and involving the community in the assessment of local needs and the delivery of interventions. 82 Implementing changes to the way our healthcare system offers screening services should been seen as both an ethical and fiscal responsibility. Policy makers need to truly listen to the needs of the women who are at highest risk of this terrible disease. The cost of not engaging these women in health services will be measured both by the financial burden cervical cancer will place on our healthcare systems and in the intangible but tragic suffering that the most vulnerable women of our society must bear. Improving relationships and communications between women and their health care professionals can be addressed in a variety of ways. Pragmatic suggestions include offering joint workshops for health care professionals and their patients focused on capacity building and patient rights, increased flexibility for appointments (i.e., drop-in options), and group appointments. Offering childcare on-site and transportation for health groups and/or appointments would contribute to increased awareness, positive feelings about and use of Pap smears for women. In summation, if I had a million dollars I would invest in creating a national longitudinal empirically supported peer- and arts-based community intervention that is culturally and linguistically appropriate and offered in a space that local women deem safe. Post Script For the past year, this project has consumed a large portion of my life. I feel extraordinarily thankful for my experiences and all I have learned. Having the opportunity to work with local organizations and young women in the community has been very rewarding. The women I worked with taught me how important it is to look at the whole picture, so to speak, when understanding women's health. Working with the women in my project taught me about the importance of having compassion in health 83 care, reinforcing the phenomenon that, as mentioned at the onset of this thesis, we can 'forget what people say and do, but we will always remember the way that people make us feel' (Angelou, M, 2001). Similarly, Plato says, "Be kind, for everyone you meet is fighting a hard battle". This was most certainly the case for many of the women involved in this project, in that they were fighting numerous 'battles' and faced with many barriers. This project has been a very emotional journey for me. The most difficult part for me, particularly because I am a mother, was hearing stories from women who had been physically/sexually victimized beginning at a very young age and the long term social, physical, emotional, and spiritual affects of such victimization. I felt very privileged to be able to form trusting relationships with the women in the health groups. With this being said, I really struggled with not bringing these emotions home with me and found it difficult to separate the two at times. Early on in the project my supervisor recommended I choose someone I could trust to emotionally support me therefore I regularly kept in contact with a friend who was also a counselor when I needed to vent at the end of my days. Self-care was absolutely necessary for this project. It is impossible to be effective and care for others when you are not taking good care of yourself. Over the duration of my project, I became quite close to the women attending the regular health groups. Sharing my own stories and being physical and emotionally available for the women was important to me for this project. My role was a researcher but also more importantly a mentor for the women. Currently, months after the project I stay in close contact with two of the women whether it be having tea, writing recommendation letters, giving advice about first year university, or helping to edit their papers. These women have also expressed an interest in offering another workshop for 84 Cervical Screening week next October and as a result I have secured funding once again with the BC Cancer Agency to make this possible. However I am very excited to take a back seat this time around and watch as the women plan and offer the next cervical health workshop. Lastly, the sheer resiliency that women in this project possessed continually amazed me. I therefore wanted to close this thesis with a poem by Maya Angelou (2001) that captures women rising from oppression. Each time I read this poem it brings tears to my eyes, as I think about the women involved in this project and reflect upon their extraordinary strength and resiliency. I Rise You may write me down in history With your bitter, twisted lies You may trod me in the very dirt But still, like dust, I'll rise. Does my sassiness upset you? Why are you beset with gloom? 'Cause I walk like I've got oil wells Pumping in my living room. Just like moons and like suns, With the certainty of tides, Just like hopes springing high, Still I'll rise. Did you want to see me broken? Bowed head and lowered eyes? Shoulders falling down like teardrops. Weakened by my soulful cries. Does my haughtiness offend you? Don't you take it awful hard 'Cause I laugh like I've got gold mines Diggin' in my own back yard. You may shoot me with your words, 85 You may cut me with your eyes, You may kill me with your hatefulness, But still, like air, I'll rise. Does my sexiness upset you? Does it come as a surprise That I dance like I've got diamonds At the meeting of my thighs? Out of the huts of history's shame I rise Up from a past that's rooted in pain I rise I'm a black ocean, leaping and wide, Welling and swelling I bear in the tide. Leaving behind nights of terror and fear I rise Into a daybreak that's wondrously clear I rise Bringing the gifts that my ancestors gave, I am the dream and the hope of the slave. 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If you have any questions or need clarification on any of the questions please let the researcher know. Once again, thanks for your participation! 1. How old are you? 2. Where did you grow up? 3. Where do you live right now? 4. What is your ethnicity? 5a. Do you participate in practices or events related to your culture? YES/NO 5b. how often would you say you participate in cultural activities? [Please circle] Daily Weekly Monthly Yearly Never 5c. please list any activities or events, related to your culture, which you are involved in: 5d. how important is your culture to you and your life? [Please circle one response] 1 [Unimportant] 98 2 3 4 5 [Of Little Importance] [Moderately Important] [Important] [Very Important] 6a. what level of education have you completed? [Please check one] Elementary School __ GEO High School College [technical program] Certificate Diploma Undergraduate Degree Masters Degree __ PhD 6b. _ _ _ 7. What level of education would you ideally like to complete? Elementary School GED High School College [technical program] Certificate Diploma Undergraduate Degree Masters Degree PhD On a scale from one to five, what do you feel the likelihood is that you will achieve your education goals? 1 2 Not at all likely 8. 3 somewhat 4 5 Very likely Please list any barriers that you can think of that may get in the way of achieving your ideal educational goals: 99 9a. What is your current living situation? I live alone I live with friends/roommates I live with my parents I live with family members I live with my partner/spouse 9b. What is your marital status? Single Separated Common law Married Widowed Divorced 10. Do you have children? [Please circle] YES / NO [If no, please skip to question 10] 1 Ob. If so, how many children do you have? 10c. Do your children live with you? YES / N O [Please check one] Part-time Full-time lOd. What are the age[s] of your child[ren]? 11. Do you currently have reliable child care for your child[ren]? YES / NO 12a. Are you currently employed? YES / NO 12b. Are you employed Full-time/ Part-time/ 12c. If you answered "YES", what type of work do you do? 100 Other 13. On a scale from one to five, please tell us your satisfaction level with your current employment [Please check one] Extremely low Below average Average Above average Excellent 14. 1 2 3 4 5 How would you describe your current financial position? Extremely poor Below average Average Above average Excellent 1 2 3 4 5 15. Do you own a vehicle or have access to reliable transportation? YES/NO Feel free to explain your mode of transportation: 16a. Please describe what the word 'health' means to you [What does good health look like, or alternatively, poor health, what factors are involved?]: 16b. The next part we wanted to know a little bit about your medical history. On a scale from 1 -5 can you let us know how you would rate your current health status: 101 Extremely poor Below average Average Above average Excellent 1 2 3 4 5 17a. How would you define stress? 17b. Using a similar scale, please let us know how you would rate your current level of stress [Please check one] Extremely low Below average Average Above average Extremely high 1 2 3 4 5 17c. How often do you feel anxious, stressed, or worried? Never Rarely Sometimes Very often Always 18. for 1 2 3 4 5 The next part is a true or false section. Please place a T for true or F false beside the following statements: When I feel stressed out I get sick Stress is directly related to my health I am good at dealing with stress in my life I do not see a relationship between stress and health in my life 102 19. On a scale from 1 [for 'not at all'] to 4 [for 'to a great extent'], please rate the 'stress' level associated with the following items in your life: 1 - Not at all 2 - Very little 3 - Somewhat 4 - To a great extent Finances Parenting Employment Education Intimate relationships Other [Please indicate] 20a. In the past year, how often have you accessed a health care professional? (e.g., doctor, nurse practitioner) 20b. In the past month, how often have you seen a health care professional? 21. Please briefly explain medical conditions for which you sought medical attention: 22. Do you have a regular family doctor? YES / NO 23. How long have you been with your family doctor? Years 24. Months What is your comfort level with your family physician? Extremely low Below average 1 2 103 Average Above average Extremely high 25. 3 4 5 How would you describe the word 'trust'? [What does trusting someone look like?] 26. Would you say you trust health care professionals? YES / NO Please keep in mind that at any point during this questionnaire you are not comfortable with answering the questions, please skip question. 27a. Are you currently in an intimate relationship? YES / NO 27b. If so, how long have you been in this relationship for? Months Years 28a. Are you sexually active? YES / NO 28b. approximately how old were you the first time you had intercourse? 29. If you are sexually active, are you able to tell us approximately how many sexual partners you had last month? . Last year? . 30. The last time you had intercourse did you use a condom? YES / NO 31. Using a scale from one to five again, how often would you say you use a condom? [Please circle one] 1 2 Never Rarely 32. 3 Sometimes 4 Very often 5 Always Have you ever had a pap smear, or cervical screening? YES / NO 104 If xyes\ when was the last time [approximately] you had one done? 33. On average how often do you receive pap smears? [Please check one] Monthly Yearly Every 2 years Whenever my physician reminds me I can't remember it was so long ago Never 34. Do you have a pap smear scheduled in the near future? YES / NO 35. What was your comfort level at your last pap smear? Extremely low 1 Below average 2 Average 3 Above average 4 Extremely high 5 36. Feel free to explain what contributed to your comfort and/or discomfort: 37. On average, do you know how often health professionals recommended women to be screened? [Please check one] Once every six months Once a year Once every two years With each new sexual partner It is different for each woman I don't really know 38. Have you ever been diagnosed with the human papillomavirus? [Also called HPV]. YES / NO 105 39. Have you had a HPV vaccine? Y E S / N O 40. [F]. Please indicate whether the following statements are true [T] or false If you do not know, please place a question mark beside the statement [?]• The only symptoms of the HPV are genital warts You can always tell if you have an STD without seeing a doctor HPV can have no symptoms Sometimes, You can't tell if you have HPV Different strands of the HPV virus can cause different symptoms If your partner has had an STD check recently, it is OK not to use a condom HPV can cause cervical cancer HPV can be asymptomatic [meaning it has no symptoms] 41. Where would you say most of your sexual health knowledge has come from? Parents School Internet sites Your partner Commercials on TV Health care professionals 42a. Have you seen any HPV commercials on television? YES / NO 42b. If so, please briefly describe what you learned from these commercials: 43. How often would you say you have positive social support around you/supporting you? [This could include family members, friends or your community] Never 1 106 Rarely 2 Sometimes 3 Very often 4 Always 5 How often do you become involved in community groups, organizations, and/or events? [This could include volunteerism, programs, or events]. Never 1 Rarely 2 Sometimes 3 Very often 4 Always 5 How often do you engage in any forms of creative expression? [Examples: drawing, painting, singing, written/oral text, dance]. Never 1 Rarely 2 Sometimes 3 Very often 4 Always 5 Do you smoke cigarettes? YES/NO How often would you say you participate in physical activities? [e.g., exercise classes, walking, running, etc.]. Never Very rarely Rarely Occasionally Frequently Very frequently 107 48. How many times per week would you say, on average, you engage in physical activities? Is there anything else you would like to add or feel is important to talk about pertaining to women's [sexual] health? In the fall, there is an upcoming women's health day long work shop. The theme is cervical health'. It's a get together for women to talk about important health issues, including sexual health topics; learn creative techniques [painting; collage]. All topics will be chosen by the women attending and planning. Is this something you may be interested in attending? YES/NO If so, please leave your telephone number and/or e-mail address so the researcher can contact you on the following page Thanks so much for your time, it is greatly appreciated! 108 Women's Health Workshop Sign-up form: h e a l t h FOR/BY y o u ! This upcoming day long workshop will be based on topics of health that YOU want to hear. All transportation, child care, and catering costs will be covered for the one day event! If you are interested in attending please let us know and we'll get in touch! Please provide us with the following information: NAME: CHILDREN ATTENDING: Best way to get a hold of you: [Please check] Home phone cell phone e-mail Phone number: Cell phone: E-mail address: Would you like to be contacted in 6 months for a short post-questionnaire? YES/NO Thanks! We will be getting a hold of you shortly! Any important health issues that YOU want to talk about at the workshop? 109