R EPERTORIO DE F UENTES IMPRESAS Y BIBLIOGRAFÍA

This study suffered from several research challenges that may have limited the explanatory power of its findings. First, the media analysis was limited by the inability to find all years of the highest-circulating women’s magazines. Archived issues of two out of the three magazines that were originally selected for sampling over four years (1995, 2000, 2005, and 2010) were completely unavailable. However, adequate and suitable proxies were located: the availability of Imagen for all four years provided an adequate opportunity to assess trends over time that served as proxies for the other two

magazines. Further, using the 2008 issues of Vanidades was close enough to 2010 that it was a suitable replacement. While using the English-language Cosmopolitan was not ideal, it did afford the opportunity to assess the topics addressed in that magazine.

This study also suffered from sampling limitations, and ultimately participants were most likely skewed towards those interested in the topic. This is probably most evident in the oncologist interviews; doctors are obviously busy people, and the only ones with (unpaid) time to spare were those with a particular interest in the topic. Young survivors were quite difficult to recruit and many different recruitment strategies were implemented. This was a finding in and of itself: a number of young survivors were uncomfortable speaking about, or even recalling, their experience with cancer. They were still so upset by it that they could not emotionally handle an interview—even though in some of these cases, their treatment had occurred many years prior. This reflects a common challenge facing researchers who are investigating stigmatized diseases, and

accordingly, the survivors who were interested may have held, as a group, more positive ideas about the cancer experience than what occurs in the general population. At the least, the range of variation was likely lower. I will also hazard an educated guess that these participants held more positive views about the likely benefits of participation, or felt a special obligation to be involved.5

Because of my difficulties recruiting younger survivors, the survivor sample ended up including more participants on the older end of the 21 to 45 age spectrum. Many of these participants were married and had completed their childbearing prior to their cancer diagnosis. Accordingly, this resulted in some disconnect between the interviews with providers, which were principally about fertility and fertility preservation, and the interviews with survivors, which were more comprehensive and included in- depth discussions about their lived experience with cancer apart from fertility and reproductive issues. Moreover, I was unable to broach direct questions about fertility preservation because of the potential to cause distress in survivors who did not already know about the risk of infertility or the existence of fertility preservation options prior to the interview. Discussion of these questions depended upon subtle probing and indirect questioning to assess their level of knowledge first, which could then be followed up with direct conversation. By its nature this strategy limits the conclusions drawn from these results regarding the exact percentage of survivors who were educated about fertility by their physicians. While this is unfortunate, the data obtained do yield important

reproduction-related findings among the survivors, and point to areas of future research.

SUMMARY

This research was a qualitative, exploratory study using a critical-interpretive epistemological approach. Drawing from ethnography and grounded theory in its

5 _{This may in particular relate to the theme that emerged in these interviews about the importance} of helping others as an impact of the cancer experience, discussed in Chapter Seven.

methodological design, several data collection methods were employed to answer the research questions. An ethnographic content analysis was conducted using three women’s magazines in order to examine media representations and public images of cancer. Unstructured key informant interviews with cancer researchers, and semi- structured interviews with cancer survivors, healthcare providers, cancer advocates, and members of the clergy addressed the beliefs, practices, and context surrounding

survivorship and cancer-related infertility in Puerto Rico.

The next chapter, Research Setting, provides an in-depth description of the social, cultural, political and economic context of Puerto Rico. The chapter will also focus on cancer statistics and current research, in order to provide an overview of the local context before the subsequent chapters delve into the study results.

Chapter Five: Research Setting1

Puerto Rico represents a critical site for the expansion of cancer survivorship research outside of middle- and upper-class populations in the mainland US. The importance of this setting lies in the juxtaposition of several factors: its unique political relationship to the US as an official territory, barriers in access to care resulting from the recent health reform, and cultural features—such as religion—that may play a role in influencing perceptions of medical technologies and long-term survival from cancer. This chapter first presents an overview of Puerto Rican history and a snapshot of its political-economic and socio-cultural context. It then proceeds to offer a more in-depth exploration of the healthcare system, and specific issues that are relevant for a study on cancer and reproduction—notably the trend towards medical tourism, the role of the Catholic Church in reproduction-related matters, emerging cancer research in Puerto Rico, and the current fertility-related services available on the island.