Factors Affecting the Transition from Pediatric to Adult Care Among Culturally Deaf Young Adults and Young Adults Who Are Deaf or Hard of Hearing

Introduction: Adolescence to adulthood is marked by many transitions, including the transition from a pediatric to an adult medical home, also referred to as a health home. For young adults who are culturally Deaf, deaf, or hard of hearing, this transition may be complicated by population-specific needs related to language, literacy, and accessibility. Prior research with transition-age adolescents and young adults who are culturally Deaf, deaf, or hard of hearing has primarily focused on education or hearing health exclusively. The purpose of this research was to investigate the transition of health care from pediatric to adult services among culturally Deaf individuals and individuals who are deaf or hard of hearing, with a specific focus on social support in transitions. Meleis’ transitions theory was used to guide the study. Methods: We collected data through online surveys and virtual semi-structured interviews. Quantitative participants included individuals who identified as culturally Deaf, deaf, or hard of hearing between the ages of 18-40 (n=40). Qualitative participants either met the previous inclusion criteria or represented stakeholders who frequently worked with the target population (n=13). For aim 1, we used a convergent parallel mixed-methods approach. For aim 2, we used a qualitative descriptive approach. Results: For aim 1, we identified the following themes related to healthcare transition experiences: young adulthood as a time of transition, personal facilitators and inhibitors of transition, community facilitators and inhibitors of transition, successfully managing care, and confidence in accessing care. Overall, the results of the demographics questionnaire, the Child and Adolescent Social Support Scale, and the Transition Readiness Assessment Questionnaire supported the qualitative findings. For aim 2, five themes emerged related to societal facilitators and inhibitors: provider knowledge, communicating in health care, accessibility, government programs, and hospital policies and politics. Discussion: Many findings align with previous transition research but reveal population-specific needs related to language and accessibility. Additionally, the findings indicated that the American Academy of Pediatrics recommendations for transition planning are not always followed. Future research should build upon these findings to improve provider education and create population-specific interventions aimed at improving the healthcare transition experience.