Professional’s Perspectives on Care Management of Young People with Perinatally Acquired HIV during Transition: A Qualitative Study in Adult Care Setting

BACKGROUND: Increasing numbers of young people with perinatally acquired HIV are surviving to adulthood. When they come of age, they leave pediatric services in which they were followed and have to be transferred to the adult health care system. Difficulties in adaptation to adult care and the numbers of young people lost to follow up after transfer to adult care have been reported. This transition phase and their retention in adult care are crucial in maintaining the clinical status of these young with HIV in adulthood. Our study aimed to explore how HIV professionals working in adult care perceive and adapt their practices to young people in transition. METHODS: Qualitative interviews were conducted with 18 health and social services professionals in hospitals or patient associations in France. A thematic analysis was conducted. RESULTS: Adult care professionals were found to be making a distinction between these young people and their patients who were infected during adulthood. On the basis of the healthcare teams’ experience, a simplified categorization of these young people into four levels can be used: those “who have everything good”; those who have some deficiencies that must be addressed; those “who have everything bad”; and those lost to follow up. Professionals interviewed highlighted the difficulties they encountered with young people in transition. Three types of problematic situations were identified: problems of acceptance of the disease; communication problems; and problems of disorientation in the new care environment. CONCLUSIONS: Despite the lack of specific training or national policy recommendations for the integration of young people with perinatally acquired HIV into adult services, all the adult healthcare teams interviewed tried to adapt their practice to this population. The results suggested that professional involvement during transition should depend on the characteristics of the patient, not be limited to a single transition model and that a dedicated structure for transition care is not appropriate for all young people.