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Ethical Space for a Sensitive Research Topic several cycles of increasing dialogue with First Nations stakeholders. This approach resulted in a rich exchange of knowledge between community stakeholders and our research team, leading to the development of a shared plan for First Nations HPV research. Because of this successful engagement process, a pilot study in one First Nations community in northwest Ontario has been completed and there is support from ten First Nations communities for a large-scale study involving up to 1,000 women. Ethical space served as the foundation for a meaningful dialogue in this participatory action research approach and can be adapted to fit other research projects in similar settings. KEYWORDS Cervical cancer screening, Pap smear, HPV test, participatory action research, ethical space, First Nations women INTRODUCTION C ervical cancer is caused by human papillomavirus (HPV) (Boshart et al., 1984; Bosh et al., 2003; Clifford et al., 2003; Walboomers et al., 1999) and can be prevented with regular screening and follow-up treatment of precancerous lesions. Precancerous cervical lesions precede cervical cancer and can be effectively treated without compromising quality of life. Two tests have been approved for primary cervical cancer screening by Health Canada and the U.S. Food and Drug Administration: the Papanicolaou (Pap) smear and the HPV DNA test. The Pap smear detects morphological changes indicative of a precursor or invasive lesion and currently is the primary screening method in Canada. Regular Pap screening has decreased both incidence and mortality of cervical cancer by 60% over the last thirty years (Ontario Cervical Screening Program, 2005). Nevertheless, in settings like northwest Ontario, more than 50% of women are seldom or never screened due to a reluctance to undergo Pap testing (Fehringer et al., 2005). A contributing factor to high cervical cancer rates includes the lack of well-organized, accessible cervical screening programs as well as poor screening uptake or follow-up on the results of screening tests (Dignan et al., 1995; Spence et al., 2007). Consequently, the majority of new cervical cancer diagnoses is in women with inadequate or no screening history (Goggin et al., 2007). Rates of cervical cancer are up to 20-fold higher among First Nations women than other Canadian women in 42 Journal de la santé autochtone, mars 2012 Alberta, the Northwest Territories, Manitoba, and Ontario (Colquhoun et al., 2010; Corriveau, 1999; Marrett & Chaudhury, 2003; Young et al., 2000). This is most likely associated with an under-screened population. Possible reasons for under-screening include the remoteness of many First Nations communities lacking local screening facilities and low awareness of the need for screening to prevent cervical cancer. (Zehbe et al., in press). Under-screening may be exacerbated by negative experiences First Nations women may have had with the mainstream health care system. Cultural safety focuses on improving health care experiences by tackling the perceived power relationship that may exist between health care providers and Aboriginal patients (Brascoupé & Waters, 2009). A lack of culturally safe screening services may strongly contribute to women’s reluctance to undergo invasive screening methods. More research is needed to investigate the underlying reasons for the high incidence of cervical cancer among First Nations women, and therefore decrease the prevalence of the disease in this population. There is a general lack of understanding about the transmission of HPV (Friedman & Shepeard, 2007) and the purpose of Pap smears and HPV tests among the general population of various countries, regions, and cultures, including northern Ontario (Brown et al., 2007; Daley et al., 2010; Sandford & Phesant, 2009). Furthermore, as sexually transmitted conditions, HPV infection and cervical cancer are stigmatized in many cultures (Camm, 2005; Waller et al., 2007). Diagnosed women may feel shame because they might be judged as promiscuous (Perrin, 2011; Kwan, 2010; Kahn et al., 2010). The sexually transmitted nature of HPV infection can also have a significant impact on women’s sexuality and intimate relationships (Newton & McCabe, 2008). Shame associated with HPV may therefore contribute
to women’s reluctance to access screening services. These social barriers to screening may be further compounded for First Nations women. There may be fear for loss of privacy when screening results are reported in small community health clinics where friends and family members may be employed. Furthermore, unequal power relationships or distrust between the woman and her health professional may be an issue, especially when non-Aboriginal health care workers are involved. All of these issues contribute to the sensitive nature of HPV research in First Nations women and call for a particularly strong focus on community engagement and respectful knowledge exchange between researchers and community stakeholders during the project planning process. In collaboration with 10 First Nations communities in northwest Ontario, we have initiated a community-based participatory action research (PAR) study, as a follow-up study to a pilot study previously conducted in one of these communities (Zehbe et al., in press). The pilot study showed high client preference (87% of participants) for a new minimally invasive screening tool, namely HPV testing based on self-sampling compared to healthcare provider-collected Pap smears. A follow-up study is planned to confirm our findings in a randomized, two-armed trial and to identify potential screening barriers. Our goal is to develop culturally safe approaches to promote cervical cancer screening and to increase participation. This in turn may increase early detection of precancerous changes and ultimately lead to a decline of high-grade cervical lesions and cancer in First Nations communities. We are mindful of potential barriers to this research, including the sensitivities of studying STIs and the schism between Western public health approaches to cervical cancer screening and First Nations women’s experiences of these relatively invasive procedures. We used a PAR approach because we are aware of the need for extensive community engagement (that may even exceed national guidelines for research with First Nations) in research planning and implementation. Adequate community engagement helps ensure equality between the research team and the community members, as well as promote meaningful community participation. We were also aware of the need to foster high quality collaboration that could be clearly distinguishable from consultation (Warry, 1990). PAR has been extensively used in community-based Aboriginal health research, although it is still a relatively new approach to public health research (Maar et al., 2011). In Aboriginal research, a successful PAR approach is linked to partnership, shared control, mutual benefit, and respect between community stakeholders and academic researchers (Kristen & Kinoshameg, 2008). It requires an understanding of the history, culture, and local context embedded in the social relationships of the community. With PAR, it is imperative that researchers understand and improve on the practices in which they participate and the situations in which they find themselves (Baum et al., 2006). To facilitate a mutual research dialogue about cancer screening between First Nations communities and our research team, we have adopted First Nations scholar Willie Ermine’s interpretation of ethical space of engagement (Ermine, 2007). Ermine explains that “the cultural tensions looming over the Indigenous/West relations, in their historical dimension, are particularly magnified on the contested ground of knowledge production and in particular its flagship enterprise of research” (Ermine, 1995). The concept of ethical space can be used to bridge these tensions by allowing for safe knowledge exchange between two worldviews. Ethical space “is formed when two societies, with disparate worldviews, are poised to engage each other” (Ermine, 2007). Given the sensitive nature of the research topic, facilitating ethical space became instrumental to the development of this collaborative study. Our collective challenge required bridging public health research approaches with First Nations women’s views and understanding of reproductive health and screening procedures. In the following section, we share our experience of creating safe environments for research teams and community members to exchange their perspectives on HPV and cervical cancer screening with the goal of developing a research plan (see Figure 1). METHODS Ethical Space for a Sensitive Research Topic Working with First Nations communities requires a considerable engagement process prior to starting a research project (Interagency Advisory Panel on Research Ethics, 2010). However, it became clear early on that potential power relationships with respect to women’s reproductive health had to be carefully considered. Ermine succinctly describes how the “monolithic presence” of the Western worldview reinforces existing power structures and social inequalities. He argues that “one of the festering irritants for Indigenous peoples, in their encounter with the West, is the brick wall of a deeply embedded belief and practice of Western universality” (Ermine, 2007). Using his analysis, a potential threat to our study would be an academically driven interpretation of the PAR process, with the result of further disempowering women at risk for cervical cancer. Journal of Aboriginal Health, March 2012 43
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