An Exploratory Study: Transition to Adulthood for College Students with Type 1 Diabetes and Their Parents

Stakeholder perspectives: Communication, care coordination, and transitions in care for children with medical complexity

“…The initial approach using focus groups changed to anonymous online surveys. However, this change may have facilitated more open sharing by participants, which aligns with findings from other studies using text‐based online surveys (Ersig & Williams, 2018; Ersig, 2019). Existing measures of care coordination and integrated care, such as the Care Coordination Measurement Tool and the Pediatric Integrated Care Survey for Parents/Guardians, were not used in this study, as questions on these measures did not assess areas of interest specific to the UCU (Stille et al, 2005; Ziniel et al, 2016).…”

Challenges Experienced by Parents of Emerging Young Adults With Type 1 Diabetes Mellitus During the Transition to College

“…This is similar to research that indicates that facilitators in the parental transition may include an EYA's high level of ability and motivation to self-manage T1DM while at school as well as the willingness of the parent to trust their EYA to take control. 27,29 Although existing research indicates that parents play a significant role in the transition of T1DM management, 15,20,27 this is the first study to focus exclusively on the parent experience during the transition to college.…”

“…28 As in previous research, the EYA's high level of ability and motivation to self-manage T1DM while at school as well as the willingness of the parents to trust their EYA to take control may ease the parental transition. 20,27,29 Trusting that their EYA will do his or her best to manage T1DM at college and understanding that mistakes in T1DM management are likely served to decrease parent T1DM-related distress as EYAs assume T1DM management responsibility. 12,13,15,26 Parents who reported promoting autonomy from an early age or early into their EYA's diagnosis indicated that they felt positive about their EYA's ability to selfmanage, which appeared to ease the transition.…”

A Delphi Study on the Healthcare Needs of Patients with Type 1 Diabetes during the Transition from Adolescence to Adulthood: Consensus among Patients, Primary Caregivers, and Healthcare Providers

“…The management dimension included 17 needs: (1) to discuss the contents and goals of disease self-management; (2) discuss how to integrate disease care into daily life; (3) discuss diet management strategies that meet developmental needs; (4) discuss the accuracy of information on the internet; (5) provide step-by-step disease self-care instructions based on individual conditions; (6) plan and execute specific and feasible exercise programs based on patient preferences; (7) enhance disease-related knowledge based on individual needs; (8) differentiate between type 1 and type 2 diabetes and develop accurate understanding of own disease; (9) understand changes in disease progression and increase awareness regarding health maintenance; (10) understand the potential time, type, and severity of complications to increase crisis awareness and improve motivation for self-care; (11) understand the symptoms and care approaches for acute and chronic complications; (12) understand the purpose of treatment or medication adjustment to increase compliance; (13) understand the effects of hormonal changes during puberty on glycemic control to reduce frustration; (14) understand the possible impact of pregnancy on glycemic control and clarify misconceptions; (15) understand contraceptive measures to reduce the impact of unintended conception in young girls in the context of maternal and child health; (16) establish accurate knowledge of disease inheritance and clarify misconceptions to avoid unnecessary stress and fear; and (17) establish links to patient medical records that can be sent to other healthcare providers for reference when necessary or in the case of an emergency.…”