UBC Theses and Dissertations
Prenatal screening and the diagnoses of fetal anomalies : a deconstruction of power/knowledge, discourse and agency in antenatal care Cender, Loryle Marie
Background: Improved prenatal screening has resulted in significantly more parents facing a diagnosis of a fetal anomaly (FA). This experience can profoundly affect parents’ wellbeing and contribute to challenges in antenatal communication and decision-making. Research Purpose: To more fully understand: (1) the communication and decision-making dynamics associated with antenatal screening and the diagnosis of an FA; (2) the underlying frameworks and power relations shaping health care provider (HCP)-parent interactions; and (3) potential strategies for HCPs to support parental decision-making. Methods: Guided by a blend of critical and Foucauldian theoretical perspectives and a critical ethnographic approach, data collection occurred at two specialized women’s centres and involved over 275 hours of observational fieldwork and 119 hours of participant interviews. A diverse sample of 114 parent participants was recruited for 67 participant observation sessions. Informal interviews were conducted with all parents and in-depth formal interviews with 18 parent participants. Ten antenatal HCPs from a broad range of disciplines/subspecialties were also interviewed. Findings: (1) HCP-parent communication and decision-making is significantly shaped by dominant biomedical, efficiency, individualism, responsibilization and disability discourses in combination with underlying power relations. (2) A biomedical lens combined with organizational imperatives promoting brevity in HCP-parent interactions can result in parents’ needs not being addressed and thereby lead to increased parental distress, inadequately informed decisions and health inequities. (3) Despite HCPs’ nondirectional intentions, diagnostic and prognostic information is often presented in biased ways, which can lead to guarded HCP-parent interactions and increased parental distress. (4) Parents’ emotional responses to an FA are conceptualized as a complex matrix of prominent emotions vacillating between four intersecting continua: (i) dread/despair–hope; (ii) powerlessness–control; (iii) self-stigma–self-respect (and associated social isolation–social integration); and (iv) low parent-fetal attachment (PFA)–high PFA. Supportive interactions are those that facilitate parents to move their emotional stance toward hope, control, self-respect, social integration, and high PFA. Implications: Based on study results, I propose multi-level recommendations for antenatal communication and care practices, education programs and future research, with the ultimate goal of promoting excellence and equity in antenatal care delivery and HCP-parent communication and decision-making support.
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