Youth medical decision-making involvement has been explored with respect to treatment of chronic health conditions (e.g., type 1 diabetes) and is linked to greater treatment adherence and self-efficacy. However, little is known about youth’s role with respect to medical testing and diagnostic procedures. As part of the evaluation of short stature, youth may undergo stimulation tests that measure growth hormone (GH) secretory capacity to determine possible GH deficiency. Testing lasts about three hours and involves specialized nursing, an in-dwelling intravenous catheter (IV) for serial blood sampling, and two medications with potential side effects. Exploring youth and parent experiences with stimulation testing (hereafter referred to as “testing”) may provide insight into strategies for providers and parents to enhance youth involvement in this and other types of decisions.
Youth (ages 8-14 years) who were scheduled for testing and one parent were recruited as part of a longitudinal, mixed-methods study exploring quality-of-life and psychosocial adjustment in youth with short stature. A subset of dyads (n=26) was randomly selected to complete semi-structured interviews at three timepoints. Two dyads were later withdrawn due to ineligibility. Interview transcripts were loaded into NVivo for coding and analysis; 27% were double-coded. The present analysis focuses on interviews of 24 youth and 24 parents prior to or during stimulation testing (i.e., visit 1).
Three main themes emerged from the interviews. Theme 1: Parents were the primary decision makers for youth to undergo testing. Several parents explained that they led the decision for their child to undergo testing and that their decision was based on recommendations from the child’s endocrinologist. Overall, youth agreed with the decision to undergo the testing, with some youth excited about it, some passively agreeing with their parents, and others agreeing with hesitation. However, one youth expressed not wanting to go through with the testing. Theme 2: Parent-youth conversations about the test primarily centered on logistics. Parents reported talking with their children about duration of and reasons for the test and ways to make the process more palatable. Several youth reported not remembering the content of these conversations, whose idea it was to undergo testing, or whether discussions about the test even took place. Parents were aware that their children may have been preoccupied with less agreeable aspects of the test, especially the IV. Theme 3: Youth expressed anxiety and uncertainty about the test, including anxiety about the IV, duration of the test, and missing school.
Encouraging youth involvement in diagnostic procedure decisions provides an opportunity for providers and parents to help youth gain efficacy in communicating about their own health needs and preferences, an important aspect of health literacy. Results of this study highlight that providers and parents must be mindful of youth’s information needs when discussing procedures with them. Clinical implications include helping parents and providers converse with youth to provide developmentally appropriate information about upcoming procedures or tests, to reduce their potential anxiety and ensure positive experiences with sub-specialty care.
Sources of Support
Supported by NIH grant #1R01HD097129 and MCHB grant #T71MC30798.
© 2022 Published by Elsevier Inc.