Survivorship, Infertility and Parenthood: Experiencing Life after Cancer in Puerto Rico

ix Chapter One: Introduction. 1 Background and Context. 2 Research Design and Research Questions . 6 Definition of Key Terms. 8 Patients, Survivors and Survivorship. 8 Infertility, Fertility Preservation, and Assisted Reproductive Technologies . 10 Overview of Chapters. 10 Chapter Two: Research on Cancer Survivorship, Infertility, and Fertility Preservation . 14 Cancer Survivorship . 14 Medical Aspects of Cancer-Related Infertility and Fertility Preservation. 20 Fertility Preservation and Post-Treatment Parenthood Options . 22 Psychological and Sociocultural Aspects of Cancer-Related Infertility and Fertility Preservation . 26 Infertility and Patient Preferences . 29 Fertility Preservation: Patient Knowledge, Attitudes and Practices . 30 Fertility Preservation: Provider Knowledge Attitudes and Practices. 31 Patient Characteristics. 34 Post-Treatment Parenthood Options. 36 Legal and Ethical Aspects of Cancer-Related Infertility . 38 Summary . 39 Chapter Three: Theoretical Perspectives on Cancer Survivorship and Reproduction. 41 Cancer Survivorship: Illness Identity and Reproductive Decision-Making . 42 Cancer Survivorship and Illness Identity . 42 The Seasons of Survival. 43 Survivorship and Identity . 45 Experiencing Survivorship . 47 Discourses of Cancer Survivorship. 49 Illness and Reproduction . 52 The Anthropology of Reproduction . 54 Centering Reproduction . 54 Stratified Reproduction . 56 Reproduction and the State. 58 Infertility and Assisted Reproductive Technologies. 60 Infertility . 60 ii Population Control versus Infertility . 60 Assisted Reproductive Technologies . 64 Inequalities in Access to Care . 64 Gendered Aspects of Infertility and ARTs. 66 Religion and ARTs. 68 Kinship Transformations . 70 Potential Theoretical Contributions of this Research . 72 Summary . 74 Chapter Four: Methods and Demographic Information. 75 Methods Used in Similar Research. 75 Media Representations of Cancer and Survivorship . 76 Cancer and Fertility . 78 Research Design. 81 Epistemological Approach. 81 Methodological Approach. 82 Data Collection Methods . 83 Content Analysis of Women’s Magazines . 83 Domains. 84 Sampling Approach . 85 Data Analysis Procedures . 87 Ethnographic Interviews . 88 Unstructured Key Informant Interviews. 89 Interview Procedures . 89 Participant Selection/Recruitment. 90 Demographic Information. 90 Semi-Structured Interviews: Survivors, Healthcare Providers, NGO Staff and Advocates, and Clergy. 90 Interview Procedures . 90 Domains and Participant Selection/Recruitment. 92 Survivors . 92 Demographic Information . 93 Healthcare Professionals . 96 Demographic Information . 97 NGO Staff and Advocates. 98 Demographic Information . 99 Clergy. 99 Demograhic Information . 100 Data Analysis Procedures . 100 Ensuring Validity and Reliability. 101 Feedback and Dissemination . 103 Ethical Issues . 103 Ethical Conduct with Human Subjects . 103 Informed Consent Procedures. 105 Confidentiality . 106 Compensation. 107 Disclosure of Infertility Risks. 107 Psychological Risks Related to Sensitive Questions . 109 Positionality of Researcher. 110 Identity as an American/Outside Researcher . 110 A Note on Language and Communication . 111 iii Identity as a Survivor/Previous Employee of Cancer Advocacy Organizations. 111 Research Limitations. 113 Summary . 114 Chapter Five: Research Setting. 116 A Brief History of Puerto Rico . 116 Puerto Rico’s Political-Economic and Socio-Cultural Context. 118 Cancer and Healthcare in Puerto Rico. 121 The Puerto Rican Healthcare System . 121 Medical Care and Relationship to the US . 123 The Catholic Church. 124 Cancer in Puerto Rico: State of the Research . 126 Fertility Clinics and Services. 130 Summary . 131 Chapter Six: Cancer in the Public Eye: Representations of Cancer in Magazines. 132 Overview of Magazines Selected. 132 Coverage of Cancer . 134 Frequency of News Items on Cancer . 134 Cross-Sectional . 134 Longitudinal . 134 Type of Item.