Meta/Static Ethnography of Adolescent and Young Adult Oncofertility Research and Practice at a United States Hospital: Implications for Sexual and Gender Minorities

Abstract

This dissertation is a meta study; a virtual ethnography of a clinical oncofertility (oncology + fertility) study with sexual and gender minority (SGM) adolescent and young adults (AYA) who received cancer care at a Midwest United States research hospital. I present two side-by-side studies about convergent objects of inquiry: SGM AYA oncofertility, and knowledge production about SGM AYA oncofertility. In doing so, I propose the novel method “meta/static ethnography”: the inception of a clinical study into an ethnographic investigation for the purpose of generating crystalline perspectives on empirical knowledge(s) and their production(s). As a field, oncofertility purports to incorporate fertility preservation and sexual health services. However, clinical and research attention to oncofertility has overemphasized biomedical aspects of fertility as a function of “cisheteronormative reproduction” rather than attending to the complex implications of oncofertility for AYA sexual orientation, gender identity, and kin relations. Therefore, further exploration into sociocultural dimensions of oncofertility in the lives of AYAs is needed to better understand and improve upon tailored supportive services. My research questions center the ways in which oncofertility research and practice for SGM AYAs are enacted; and the conditions of possibility at play in ethnographic knowledge production during a global pandemic. I use a combination of video-based participant-observation in activities related to the upstart of a hospital-based AYA program; and semi-structured interviews with SGM AYAs. Findings suggest that oncofertility services for SGM AYAs, and the assessments that inform those services, are always already enacted in terms of – albeit differently to – cisheternormative discourses of reproduction. Themes surrounding a priori cisheternormativity emerged regarding: coming out (i.e., queer identity disclosure) in the clinic – or not; and patient-provider discussions about sexual health, gender health, and fertility preservation – or lack thereof. Furthermore, themes surrounding embodied trauma emerged, as did examples of adaptability. I suggest that SGM AYAs experience compounded liminality – a thrice liminal state of evolving age, health, and queer identity which simultaneously amplifies SGM AYA vulnerability yet exponentializes potential for resilience in the face of embodied transformation arising from cancer. Such findings contribute to clinical, theoretical, and methodological developments that bear implications for oncology and oncofertility providers, social science researchers, social work practitioners, and SGM AYAs.