Parents’ views on and need for an intervention during their chronically ill child’s transfer to adult care

Abstract

Parents of chronically ill adolescents play a significant role during their child’s transition and transfer to adult care. Parents seek help and support, but appropriate initiatives are still lacking. Thus, there is an urgent call for knowledge regarding parents’ needs and views on such support. The aim of this study was to examine, in relation to parents of chronically ill adolescents: 1) views and experiences regarding their child’s transfer from paediatric to adult care, and 2) which initiatives parents preferred in relation to the transfer. The study was based on the interpretive description method, and data were collected through face-to-face or telephone interviews with parents of chronically ill adolescents aged 16–19 (n = 11). We found three overall findings: ‘Feeling acknowledged vs. feeling excluded’, ‘Perceived differences between paediatric and adult care’ and ‘Feeling safe vs. entering the unknown’, together with three preferred initiatives: 1) Joint consultations, 2) Educational events and 3) Online support/website. In general, we found that some parents were extremely worried about the transfer, while others were not. Our results suggest that transfer initiatives targeting parents should focus on knowledge, expectations, relationships and goals in accordance with the social-ecological model of adolescent and young adult readiness to transition (SMART).

Transición del adolescente sano al servicio médico de adultos

“…Entablar una relación médico paciente con el personal de salud de adultos, para continuar el manejo médico ya establecido. Se deben cumplir los siguientes aspectos que son la base de la entrega: 1) asegurar que el paciente y el cuidador estén preparados para este paso, se debe evaluar el nivel de preparación de cada adolescente y cuidador, 2) debe ser realizada en momentos de estabilidad física y mental, en caso de evidencia de alteraciones se postergará hasta asegurar su aptitud para la realización del traspaso, de lo contrario, en paciente sano, se hará el traspaso en el transcurso de los 18 años del paciente y 3) es necesario asegurar la continuidad en la provisión de recursos e insumos necesarios para el manejo de la transición, es importante continuar con pequeñas visitas o comunicaciones por parte de personal de salud pediátrico para identificar dificultades precozmente (6, [23][24][25][26][27][28].…”