Mette Hald(1), Katrine Carlsen(1), Inge Nordgaard-Lassen(2), Vibeke Wewer(1)

Affiliates

1) Department of Pediatrics, Hvidovre Hospital, University of Copenhagen, Hvidovre, Denmark; 2) Gastrounit, Medical Division, Hvidovre Hospital, University of Copenhagen, Hvidovre, Denmark;

Abstract

BACKGROUND: The young patient, the parents, the pediatric and the adult provider constitute four central actors in transition and transfer, and they all have different roles, approaches and needs. Our aim was to clarify challenges and background for each actor.

METHOD: Statements from semi-structured interviews of adult gastroenterologists and nurses were analyzed and interpreted by social scientific principles.

RESULTS: “Gaining independence is quite difficult, and adolescents afflicted by chronic disease may need more time to achieve it”. Disease often implicates a delay in maturity. Adolescents have different approaches towards disease-management, however, key characteristics divide patients into four subgroups: Self-confident and autonomous patients; Conscious and compliant patients; Backseat patients, leaning on their parents; Worried and insecure patients, needing parental support (Jedeloo, 2010).

“Some parents find it difficult to let go, and they stay engaged for a long time. […]. Some of the young hardly get a word in”. Parents must relate to two parallel processes during the time of transition: A gradual transfer of control and responsibilities to the adolescent and accepting shift of treatment authority to adult setting.

“In the joint consultations we become aware of the fact that each of us consider the patients to be either big children or mini adults, and that our interpretation is shaped by our preconceptions”. The pediatrician’s perspective is formed by years of care and treatment, whereas the adult gastroenterologist sees a new adult patient. The cultural chasm between the two settings is challenging for transferring patients.

CONCLUSION: Young patients need focused education and motivation to actively manage their disease, and parents need support to step back. Cultural gaps between pediatric and adult services complicate the transfer, and therefore, clear roles, obligations, interconnections and mutual trust need to be worked out. All four actors need to take active part in the process.