title: Non-adherence in adolescent transplant recipients: the role of uncertainty in health care providers.
abstract: To optimize self-management and adherence in adolescent patients, HCPs need to discuss not only medical and treatment-related issues, but also general health and psychosocial concerns. Our study aimed to explore how the members of the paediatric team in our programme understand NA in adolescents, and how they define their own role regarding self-management education. We used a sequential mixed methods design and conducted a qualitative observational and in-depth interview study (n=22) and a quantitative descriptive study through self-administered questionnaires (n=31). Our results show a discrepancy between the HCPs' understanding of the complex psychosocial factors impacting on long-term adherence, and their current limited practice of patient education. A number of uncertainties were found to explain the HCPs' perceived difficulty to engage in comprehensive patient education activities: uncertainty regarding (i) the health status of transplant recipients; (ii) a shared operational definition of adherence and the cause of organ rejection in some cases; (iii) the extent to which adherence is a shared responsibility which involves the HCPs as patient educators; (iv) the long-term impact of a LRD. To avoid the risk of conveying incongruent messages, multidisciplinary health care teams need to explicitly acknowledge and discuss the various areas of uncertainty, some of which are inherent to transplantation.
authors.affiliation: Institute of Health and Society, Université Catholique de Louvain Paediatric Surgery and Transplant Unit, Saint-Luc University Clinics, Université Catholique de Louvain, Bruxelles, Belgium. isabelle.aujoulat@uclouvain.be
authors.forename: Isabelle
authors.initials: I
authors.lastname: Aujoulat
authors.forename: Alain
authors.initials: A
authors.lastname: Deccache
authors.forename: Anne-Sophie
authors.initials: AS
authors.lastname: Charles
authors.forename: Magda
authors.initials: M
authors.lastname: Janssen
authors.forename: Catherine
authors.initials: C
authors.lastname: Struyf
authors.forename: Julie
authors.initials: J
authors.lastname: Pélicand
authors.forename: Olga
authors.initials: O
authors.lastname: Ciccarelli
authors.forename: Fabienne
authors.initials: F
authors.lastname: Dobbels
authors.forename: Raymond
authors.initials: R
authors.lastname: Reding
mesh_terms: D000293:Adolescent; D000294:Adolescent Behavior; D001291:Attitude of Health Personnel; D001530:Belgium; D003142:Communication; D003430:Cross-Sectional Studies; D005260:Female; D006084:Graft Rejection; D006085:Graft Survival; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel; D006801:Humans; D016031:Liver Transplantation / Q000379:methods / Q000523:psychology*; D008297:Male; D010348:Patient Care Team / Q000458:organization & administration; D010349:Patient Compliance; D010353:Patient Education as Topic; D011379:Prognosis; D012648:Self Care; D011795:Surveys and Questionnaires; D035501:Uncertainty