Fellow Childrens Hospital of Philadelphia Philadelphia, Pennsylvania, United States
Background: Social media, defined as any internet-based application that can be used to share text, images, or video, is a dominant force in American society and in healthcare. Families of infants in the neonatal intensive care unit (NICU) use social media for general reasons, e.g., to exchange information, provide and receive support, and connect with other NICU families. However, nuanced motivations for using social media are unknown, leaving gaps in our understanding of how to counsel NICU families on what they might encounter on the internet. Objective: This qualitative study seeks to deepen our understanding of how and why families use social media to make sense of their experiences in the NICU. Design/Methods: This study, informed by constructivist grounded theory, is a thematic analysis of individual, semi-structured interviews of 10-20 parents of NICU infants. Participants are English-speaking; >18 years of age; and care for infants < 12 months of age who are patients in the Neonatal Follow-Up Program at the Children’s Hospital of Philadelphia (CHOP). An interview guide was created with the input of the CHOP Research Institute Family Advisory Council. The domains of the interview guide relate to the family's: NICU experience; use of social media; social support system; and relationship with healthcare providers. Interviews are conducted, recorded, and transcribed in Microsoft Teams and Stream. Interviews transcripts are qualitatively coded in NVivo 12 to identify overarching themes. Data collection and analysis are iterative processes and will continue until thematic sufficiency is achieved. Participants will be asked to provide feedback on the results of the primary analysis to ensure trustworthiness. This study has been approved as exempt from review by the CHOP IRB (#22-020320). Study completion is anticipated by January, 2024.