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 two-hour 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.
BACKGROUND: Caregivers of children with cancer can experience stress when seeking care in the emergency department. We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. PROCEDURE:A qualitative evaluation of emergency department (ED) visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age 11 -21) currently receiving therapy for a cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. RESULTS:A total of 25 toolkits were received (7 children, 18 caregivers), with about threequarters of participants living greater than 1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decisionmaking regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-toprovider and provider-to-caregiver/patient communication.
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