Toward a theoretical understanding of young female cancer survivors’ decision-making about family-building post-treatment

Abstract

Purpose: Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors' experiences and decision-making related to familybuilding after cancer.Methods: Semi-structured interviews explored fertility and family-building themes (N=25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis.Results: Participants averaged 29 years old (SD=6.2); were mostly White and educated. Four major themes were identified: Sources of Uncertainty, Cognitive and Emotional Reactions, Coping Behaviors, and Decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress,

A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype

“…Our previous work suggested that women who experienced more intense emotions of distress and fear often described lower self-efficacy to manage risks and, at the most extreme, avoidance of fertility information and disengagement from decision-making processes [ 19 ]. These findings are consistent with the research delineating the impact of affective states on medical decision making and behavior, such that anxiety and fear tend to lead individuals to prioritize short-term gratification over long-term goals [ 45 , 46 ].…”

“…Two additional qualitative studies explored posttreatment fertility concerns [ 21 ] and family-building experiences [ 22 ] and informed our understanding of user needs. On the basis of this work, semistructured interviews (N=25) were conducted with young adult female survivors of cancer (aged 15-45 years) who received gonadotoxic treatment and were either interested in future family building or uncertain about their family-building plans [ 19 ]. Briefly, women reported high rates of unmet information needs, including uncertainty about reproductive survivorship care and where to obtain trusted information.…”

“…Briefly, women reported high rates of unmet information needs, including uncertainty about reproductive survivorship care and where to obtain trusted information. They felt overwhelmed and distressed by the prospect of pursuing family building and its expected, associated challenges [ 19 ]. When asked about support preferences, they indicated a desire for step-by-step instructions to learn about their options and guide decision making and follow-up care [ 20 ].…”

“…On the basis of our background work [19][20][21][22], literature review [34], and clinical experience (Figure 2), 6 personas were created representing user types. The personas varied to represent different patient situations based on sociodemographic characteristics, cancer, and reproductive health factors.…”

“…This study presents the steps taken to develop the prototype of the website, Roadmap to Parenthood , based on user-centered design practices and guidelines for developing DAs and health care resources for diverse patient groups and health literacy levels. This work was guided by a theoretical approach grounded in the self-regulation theory [ 17 , 18 ] and further developed in our preliminary work, which is described elsewhere [ 19 , 20 ]. In this paper, we review the initial design steps and process to develop a DA prototype before conducting formal usability testing.…”