Title: Non-adherence in adolescent transplant recipients: the role of uncertainty in health care providers
Authors: Aujoulat, Isabelle ×
Deccache, Alain
Charles, Anne-Sophie
Janssen, Magda
Struyf, Catherine
Pélicand, Julie
Ciccarelli, Olga
Dobbels, Fabienne
Reding, Raymond #
Issue Date: Mar-2011
Publisher: Wiley-Blackwell Publishing, Inc.
Series Title: Pediatric Transplantation vol:15 issue:2 pages:148-56
Article number: 10.1111/j.1399-3046.2010.01429.x
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.
ISSN: 1397-3142
Publication status: published
KU Leuven publication type: IT
Appears in Collections:Interfaculty Centre for Biomedial Ethics and Law
Academic Centre for Nursing and Midwifery
× corresponding author
# (joint) last author

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