"It Was All Trial and Error"—The Perspective of Parents of Emerging Adults with Type 1 Diabetes during the Transition to Independence

Introduction: Emerging adults ages 18-25 years with type 1 diabetes (T1D) navigate the transition to independence in partnership with their parents. Few programs exist to meet the educational needs of parents during this transition, and little is known about their perceived knowledge deficits or readiness to provide guidance for their children. The purpose of this study was to describe the lived experience and diabetes-specific educational needs of parents of emerging adults with T1D.

Methods: Parents of adults with T1D aged 18-25 years were recruited to participate. Written informed consent was obtained and participants then took part in a semi-structured interview. Interviews were digitally recorded and professionally transcribed. A descriptive content analysis of the transcripts began after the first interview and proceeded until saturation was reached. Following the interview, participants were sent links to the study’s diabetes education website that included information on transition topics.

Results: Twenty-two parents (5 fathers, 17 mothers) of emerging adults participated in the study. Six themes emerged from the transcribed interviews: No Roadmap, Few Resources; Peers as Primary Source of Support; New Roles Require a New Communication Style; Parents Sometimes Excluded from Care; Begin Early, Go at the Child’s Pace; and Fears, Challenges, and Opportunities. All participants expressed openness to diverse education modalities, including in person, online, group videoconference, and social media. Participants received 110 push notifications, resulting in 964 page views on the study website.

Conclusions: Parents of emerging adults with T1D have a central role in their child’s transition to independence, but may not receive adequate guidance to be successful in this endeavor. The results of this study underscore the need for a tailored diabetes education program for parents of emerging adults that includes a component of peer support.