Browsing by Author "Kuppermann, Miriam"

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    Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach
    (Springer, 2019-06) Edmonds, Brownsyne Tucker; Hoffman, Shelley M.; Lynch, Dustin; Jeffries, Erin; Jenkins, Kelli; Wiehe, Sarah; Bauer, Nerissa; Kuppermann, Miriam; Obstetrics and Gynecology, School of Medicine
    Background Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference sensitive and value laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach. Methods We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers. Each 2-h session involved design research activities to generate ideas and facilitate sharing of values, goals, and attitudes. Participant feedback shaped the design of three prototypes (a tablet application, family story videos, and a virtual reality experience) to be tested in a final session. Results Ninety-five individuals (48 mothers/partners; 47 providers) from two hospitals participated. Most participants agreed that the prototypes should include factual, unbiased outcomes and probabilities. Mothers and support partners also desired comprehensive explanations of delivery and care options, while providers wanted a tool to ease communication, help elicit values, and share patient experiences. Participants ultimately favored the tablet application and suggested that it include family testimonial videos. Conclusion Our results suggest that a DST that combines unbiased information and understandable outcomes with family testimonials would be meaningful for periviable SDM. User-centered design was found to be a useful method for creating a DST prototype that may lead to improved effectiveness, usability, uptake, and dissemination in the future, by leveraging the expertise of a wide range of stakeholders.
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    Feasibility and acceptability of chaplain decision coaching on Periviable resuscitation decision quality: A pilot study
    (Elsevier, 2024-02-21) Varner-Perez, Shelley E.; Hoffman, Shelley M.; Coleman-Phox, Kimberly; Bhamidipalli, Sruthi; Monahan, Patrick O.; Kuppermann, Miriam; Tucker Edmonds, Brownsyne; Obstetrics and Gynecology, School of Medicine
    Objective: To pilot test and assess the feasibility and acceptability of chaplain-led decision coaching alongside the GOALS (Getting Optimal Alignment around Life Support) decision support tool to enhance decision-making in threatened periviable delivery. Methods: Pregnant people admitted for threatened periviable delivery and their 'important other' (IO) were enrolled. Decisional conflict, acceptability, and knowledge were measured before and after the intervention. Chaplains journaled their impressions of training and coaching encounters. Descriptive analysis and conventional content analysis were completed. Results: Eight pregnant people and two IOs participated. Decisional conflict decreased by a mean of 6.7 (SD = 9.4) and knowledge increased by a mean of 1.4 (SD = 1.8). All rated their experience as "good" or "excellent," and the amount of information was "just right." Participants found it "helpful to have someone to talk to" and noted chaplains helped them reach a decision. Chaplains found the intervention a valuable use of their time and skillset. Conclusion: This is the first small-scale pilot study to utilize chaplains as decision coaches. Our results suggest that chaplain coaching with a decision support tool is feasible and well-accepted by parents and chaplains. Innovations: Our findings recognize chaplains as an underutilized, yet practical resource in value-laden clinical decision-making.
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    Prospective parents’ perspectives on antenatal decision making for the anticipated birth of a periviable infant
    (Taylor & Francis, 2018) Edmonds, Brownsyne Tucker; Savage, Teresa A.; Kimura, Robert E.; Kilpatrick, Sarah J.; Kuppermann, Miriam; Grobman, William; Kavanaugh, Karen; Obstetrics and Gynecology, School of Medicine
    Objective: To examine prospective parents’ perceptions of management options and outcomes in the context of threatened periviable delivery, and the values they apply in making antenatal decisions during this period. Study design: Qualitative analysis of 46 antenatal interviews conducted at three tertiary-care hospitals with 54 prospective parents (40 pregnant women, 14 partners) who had received counseling for threatened periviable delivery (40 cases). Results: Participants most often recalled being involved in resuscitation, cerclage, and delivery mode decisions. Over half (63.0%) desired a shared decision-making role. Most (85.2%) recalled hearing about morbidity and mortality, with many reiterating terms like “brain damage”, “disability”, and “handicap”. The potential for disability influenced decision making to variable degrees. In describing what mattered most, participant spoke of giving their child a “fighting chance”; others voiced concerns about “best interest”, a “healthy baby”, “pain and suffering”, and religious faith. Conclusions: Our findings underscore the importance of presenting clear information on disability and eliciting the factors that parents deem most important in making decisions about periviable birth.
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    Use of medical, surgical and complementary treatments among women with fibroids
    (Elsevier, 2014-11) Jacoby, Vanessa L.; Jacoby, Alison; Learman, Lee A.; Schembri, Michael; Gregorich, Steven E.; Jackson, Rebecca; Kuppermann, Miriam; Department of Obstetrics and Gynecology, IU School of Medicine
    OBJECTIVE: To examine the use of medical management, uterus-preserving surgery (UPS), and complementary treatments among women with uterine fibroids. STUDY DESIGN: Prospective cohort study of 933 premenopausal women ages 31-54 years with symptomatic fibroids who participated in the Study of Pelvic Problems, Hysterectomy, and Intervention Alternatives (SOPHIA) for an average of 4.3 years (SD 2.5 years). Incident use of fibroid treatments was determined through annual interviews. Linear regression models were used to compare changes in fibroid-related symptoms among women who underwent UPS versus those who did not undergo surgery. RESULTS: Participants were racially and ethnically diverse, with a mean age of 43 years. During study follow-up, 531 participants (57%) did not undergo UPS or hysterectomy, 250 (27%) had at least one UPS, and 152 (16%) underwent hysterectomy. Complementary and alternative treatments were commonly used, including exercise (45%), diet (34%), herbs (37%), and acupuncture (16%): participants reported significant symptom improvement and few side effects with these interventions. In multivariable linear regression models, women who did not undergo surgery during the study reported improvement in dyspareunia (p<.001), pelvic pain (p<.001), and menstrual cramps (p<.001). However, women who underwent UPS reported greater overall resolution of "pelvic problems" compared with women who did not have surgical treatment (difference in change score 1.18 on a four-point Likert scale, p<.001). CONCLUSION: UPS are effective treatments for women with fibroids, but many women use hormonal or complementary treatments and report significant symptom improvement without surgical intervention.
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    User-testing of a decision-support tool for parents facing threatened periviable delivery: The Periviable GOALS decision aid
    (Elsevier, 2021-06) Tucker Edmonds, Brownsyne; Hoffman, Shelley A.; Laitano, Tatiana; Coleman-Phox, Kimberly; Castillo, Esperanza; Kuppermann, Miriam; Obstetrics and Gynecology, School of Medicine
    Background To report user-centered design methods and stakeholder acceptability ratings of the Periviable GOALS (Getting Optimal Alignment around Life Support) decision aid (DA). Methods ‘Experienced’ and ‘expectant’ mothers engaged in content and design refining sessions. Five videos (10 families) were embedded in the DA to highlight life after delivery. User-testing sessions were conducted with mothers and providers to assess acceptability. End-user testing was conducted with hospitalized women facing potential periviable delivery to assess acceptability and feasibility in the clinical setting. Results 108 participants engaged in sessions from July 2017-January 2020. Twenty-seven refining sessions resulted in a DA providing survival estimates, neonatal outcomes descriptions, and values clarification exercises. Five white and five black women participated in the videos; six having surviving children (ages 16 months-4 years). Twelve mothers, 16 providers, and six hospitalized women evaluated acceptability. 95.1 % found the content “just right,” 94.9 % rated the videos “good” or “excellent,” and 97.2 % believed GOALS would support families in periviable decision-making. Conclusion Our results highlight the importance of developing a DA that is acceptable for patient use with direct involvement of stakeholders.