Transition from paediatric to adult services: experiences of HIV-positive adolescents

Abstract

In this small, preliminary study, semi-structured interviews were conducted with seven adolescents to explore their experiences of transition between paediatric and adult HIV care services. In general, the transition process established between the two health care units was considered by most participants to be beneficial, particularly the introduction of adult service providers early on in the transition preparation period. Four of the participants found the transition 'easy', whereas three had concerns that possibly delayed their transition, including coordination of haemophiliac and HIV care and fear of an adult environment. Individuals who had experienced little input into their care decisions during their paediatric appointments were more positive and ready for transition than those who had been more involved. Confidence and attachment with paediatric staff generally involved those who had been more involved in their care decision making. On transition, some of the participants were not prepared for the predominantly gay male population and were disappointed in not seeing other adolescents. The benefits of transition included the sense of independence, the shift in responsibility to the individual and general satisfaction in being treated as an adult. For those with strong paediatric staff rapport, a sense of loss in these relationships was expressed. Participants were forthcoming in suggesting recommendations for future transitions that are discussed.

The Happy Teen programme: a holistic outpatient clinic‐based approach to prepare HIV‐infected youth for the transition from paediatric to adult medical care services in Thailand

“…We found that youth whose parents had died had lower knowledge scores at 18 months compared to those whose parents were alive. This is in line with research that has shown that parental engagement has a positive impact on student achievement and literacy [24,25], suggesting that parental involvement and family‐based interventions play an important role in achieving optimal continuum of care for transitioning of youth living with HIV [3,21,26]. …”

“…The aim is to promote youth self‐confidence, improve the communication skills of youth and their caretakers, and to allow youth to share experiences and receive support from their peers and caretakers for issues related to sexual reproductive health, career plans, and HIV care [10]. The programme engaged adult providers to participate in the one‐day workshop and half‐day meetings so that adult providers and youth could work together to coordinate the transition from one provider to another [1,2,21,22]. In Thailand, many youth live with their parents or relatives and are under the direct supervision of adult caretakers.…”

Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

“…A number of studies have focused on the views of chronically ill adolescents and their parents, but a disease-specific approach was mostly applied [4,5,15,16,24,26]. It was concluded that this disease-specific focus does not allow generalization of the results for transition recommendations [8].…”

Experienced Continuity of Care When Patients See Multiple Clinicians: A Qualitative Metasummary

“…Learning from hospital discharge planning, transition care provides information to help patients anticipate and understand the new environment and know where to get help, and it outlines a contingency plan for returning to a safe care environment in the case of unmanageable distress. 35,40,41,43,51 Informational Continuity Information Among Clinicians Experienced Through Gaps Patients assume clinicians are communicating until proven otherwise. Communication failures defi ned patients' experience of discontinuity in almost twothirds of the studies.…”