Internalizing motivation to self-care: a multifaceted challenge for young liver transplant recipients.

The transition from parent-controlled care to self-managed care represents an important challenge for adolescents with chronic conditions. We sought to gain a deeper understanding of the factors influencing the internalization of motivation to self-care in adolescent liver transplant recipients. We conducted a qualitative study using in-depth interviews with 18 young patients. We triangulated the data collected from the patients with data from parents and health care providers, and used an inductive approach to analyze the data. Our results illustrate three interrelated challenges that impact on young patients' motivation to self-care: (a) the cognitive challenge of fully understanding one's condition and personal health risks; (b) the behavioral challenge of developing independence regarding self-management issues; and (c) the psychological challenge of building a sense of self-ownership and purpose. The latter involves overcoming the trauma of survival and coming to terms with feelings of obligation, two challenges inherent to transplantation that warrant further investigation.

Non-adherence in adolescent transplant recipients: the role of uncertainty in health care providers.

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.