WIP 8 - Examining Attitudes Towards the Collection, Storage, and Use of Sexual Orientation and Gender Identity (SOGI) Data among Adolescents and their Caregivers
Adolescent Medicine Fellow Children's Hospital of Philadelphia Philadelphia, Pennsylvania, United States
Background: Sexual and gender minority youth (SGMY) are more likely than their peers to experience poor physical health and are at higher risk of depression, anxiety and suicide. Research shows LGBTQ+ youth value opportunities to discuss their gender identity and sexual orientation (SOGI) with healthcare providers. This can be a vital step in building patient-provider rapport and affirming a patient’s identity, which can be lifesaving. The electronic health record is a critical tool for collecting, storing and utilizing SOGI data. While best practices involving SOGI data have been developed for adults, limited research exists for SGMY. There is a pressing need to gain insight into adolescent and caregiver perspectives on SOGI data, with a focus on adopting a patient-centered approach to bolster trust, ensure safety and improve healthcare outcomes for SGMY. Objective: We aim to elucidate the attitudes and preferences of diverse adolescents and their caregivers towards the methods of collecting, storing, and using SOGI data in pediatric healthcare settings, contributing to improved data management practices and healthcare outcomes for SGMY. Design/Methods: This qualitative study will include adolescents aged 13-21 of all sexualities and gender identities as well as their caregivers. Participants will be consecutively recruited until thematic saturation is reached; estimating 20-30 adolescents and 20-25 caregivers will be enrolled. Participants will engage in individual, semi-structured interviews addressing their experiences and perceptions of SOGI data collection, storage and utilization as well as a cognitive interview component. Innovative video-elicitation methods will be employed to gather feedback within simulated clinical encounters, facilitating immersive discussions and centering participants as collaborators and content experts. Interviews will be recorded, transcribed, and analyzed using NVivo software, employing a phenomenological theory approach to coding and analysis. The study received IRB approval; data collection and analysis will be completed before the PAS Meeting.