With improved health care, increasing numbers of children and adolescents with chronic illness and disability now live into adulthood. With this change, the health care community needs to address problems related to the transition from parents caring for their young children's needs to increasing health care responsibility being required of adolescents and young adults (AYA). The current article presents a conceptualization of relevant research related to the transition of health care responsibility from parent to AYA. Using a developmental systems perspective, representative literature on adolescent and dyad-level factors related to the transition of health care responsibility is reviewed to inform clinical practice and future intervention research. To identify the health care tasks that researchers have thus far considered as most important for successful transition, we review assessment measures in this area. The varying levels of agreement on transition of health care behaviors provide an index of current thought by experts in this field. Those behaviors consistently identified as key for successful transition of responsibility from parent to adolescent are outlined to inform future research and clinical practice.
Objective To examine factors associated with adolescent and parent-reported adherence to prescription and over-the-counter (OTC) medications in a cross-sectional sample of youth with inflammatory bowel disease (IBD). Method Ninety adolescents and their parents completed measures of medication adherence and disease, individual, and family factors while attending an outpatient gastroenterology appointment. Results Longer time since diagnosis, greater perceived disease severity, and a lack of autonomous motivation to adhere predicted adolescent report of lower adherence to prescription medications. Similarly, longer time since diagnosis predicted adolescent report of lower adherence to OTC medications. Less time since diagnosis, greater maternal involvement in the medical regimen, higher perceived disease severity, and less perceived conflict predicted better parent-reported adherence to OTC medications. Conclusions Interventions for improving adherence in adolescents with IBD should address disease, individual, and family factors with special attention given to adolescents who have been diagnosed longer.
1 March 2012 in Journal of Pediatric Gastroenterology and Nutrition
Objective To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence. Method In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures. Results AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence. Conclusion AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility.
22 February 2011 in Journal of Pediatric Psychology
Objectives This study aimed to identify prospective predictors of health-related quality of life (HRQOL) for adolescent solid organ (kidney, liver, heart, lung) transplant recipients. Methods Data regarding demographics, individual/transplant characteristics, and environmental characteristics were gathered from 66 adolescent transplant recipients and their families at baseline and used to predict the physical functioning, mental health, and general health perceptions domains of HRQOL 18 months later. Results Baseline levels of HRQOL explained the greatest amount of variance in levels of HRQOL at follow-up; however, specific demographic (i.e., income), individual/transplant (i.e., adherence, frequency of rescheduled clinic appointments, and presence of a rejection episode), and environmental factors (i.e., family conflict) contributed to the variance in HRQOL domains beyond baseline levels. Conclusions This study identified certain modifiable individual and environmental factors and non-modifiable risk factors associated with lower future HRQOL. Transplant centers should begin screening and addressing these factors to potentially improve HRQOL.