Table 3 Barriers to Healthcare Transition using Youth with HIV and Clinicians’ Perspectives

1

Difficulty Trusting New Clinician

YLH might find it difficult to connect with a new clinician, particularly in comparison to their pediatric doctor. YLH also reported feeling judged for their medical history or reluctant to share sensitive and traumatic parts of their life.

2

Leaving Pediatric Team

Relationships with the patient’s pediatric team, particularly with doctors and case workers, are often emotionally significant. YLH can be reluctant to lose both the relationships and the additional logistical support.

3

Communication Issues

Adult clinicians have heavier caseloads and see YLH less often. YLH reported frustration both with slow response times and decentralized communication, both of which hinder attempts to build trust.

4

Adjustment to Adult Healthcare System

Particular elements of adult care, such as fewer appointments, moving to a new clinic, increased responsibility, or a general change in routine made it difficult for some YLH to transition.

5

Appointment Scheduling

Some YLH were frustrated with the wait time to see a doctor, others found it confusing to schedule appointments, and others were frustrated when the limited appointment times did not fit with their work schedule.

6

Transportation

Some YLH struggled to get to appointments on time or find parking. Others moved further away from their doctor or had difficulty traveling to their clinic.

CLINICIAN BARRIERS

1

Leaving Pediatric Team

Relationships between YLH and their pediatric clinicians are typically long-standing and emotionally significant. Transition is often hindered by general reluctance of both YLH and clinicians to break this bond.

2

Accessibility of Clinicians

Adult clinicians were described as being more difficult to engage with, noting that it may take weeks to get an appointment or require multiple steps to get a human on the phone when a patient requires assistance.

3

Telling their Story

YLH were often described by clinicians as being reluctant to “tell their story” to a new clinician. This reluctance is often discouraging enough to interfere with moving on to adult care.

4

Forced Increased Autonomy

Adult care comes with more autonomy for YLH and fewer support resources. YLH are not always prepared to take on these new responsibilities and they can fall out of care as a result.

5

Difficulty Trusting New Clinician

Connecting with an adult clinician is difficult for YLH as they grieve the loss of their relationship with their childhood clinician and adjust to a system that requires less face time than they are accustomed to.

6

Developmental Stage

YLH who are at transition age have variable levels of maturity and some are simply not ready to take on the new responsibilities of adult care, leading to an unsuccessful transition.