Youth and Parent Perceptions of Youth Decision-Making Roles Regarding Evaluation for Short Stature.

Youth decision-making involvement (DMI) in medical treatment associates with greater adherence and feelings of self-efficacy. However, little is known about youth DMI regarding medical evaluation and diagnostic procedures. Using thematic analysis of semi-structured interviews, we explored parent (n=24) and youth (n=24) perceptions of youth roles in the decision to undergo evaluation for short stature. Five themes emerged about evaluation decisions including: parents/providers were gatekeepers, some parents sought youth agreement, conversations focused on logistics, some parents gave limited information, and youth expressed anxiety. Results suggest that including youth in discussions about evaluation may alleviate anxiety and uncertainty about upcoming procedures.

Adolescent, Parent, and Clinician Perspectives on Increasing Adolescent Involvement in Decision-Making During Clinic Visits.

INTRODUCTION: This study aimed to describe adolescent, parent, and clinician ideas for enhancing adolescent decision-making involvement (DMI) during clinic visits for chronic illness. METHOD: Adolescents who recently attended a follow-up visit for a chronic illness, their parents, and clinicians were interviewed. Participants completed semistructured interviews; transcripts were coded and analyzed in NVivo. Responses to questions about ideas to increase adolescent DMI were reviewed and sorted into categories and themes. RESULTS: There were five themes: (1) adolescents need to understand their condition and regimen, (2) adolescents and parents should prepare before the visit, (3) clinicians and adolescents should have one-on-one time, (4) opportunities for condition-specific peer support would be helpful, and (5) clinicians and parents should engage in specific communication behaviors. DISCUSSION: Findings from this study highlight potential clinician-, parent-, and adolescent-focused strategies for enhancing adolescent DMI. Clinicians, parents, and adolescents may need specific guidance on how to enact new behaviors.

Patient and Parent Characteristics Related to Quality of Life and Self-Esteem in Healthy Youth Undergoing Provocative Growth Hormone Testing.

OBJECTIVE: To examine how height and youth as well as parenting characteristics associate with quality of life (QoL) and self-esteem among healthy youth undergoing growth evaluation with growth hormone (GH) testing. STUDY DESIGN: Healthy youth, aged 8-14 years, undergoing provocative GH testing, and a parent completed surveys at or around the time of testing. Surveys collected demographic data; youth and parent reports of youth health-related QoL; youth reports of self-esteem, coping skills, social support, and parental autonomy support; and parent reports of perceived environmental threats and achievement goals for their child. Clinical data were extracted from electronic health records. Univariate models and multivariable linear regressions were used to identify factors associated with QoL and self-esteem. RESULTS: Sixty youth (mean height z score -2.18 ± 0.61) and their parents participated. On multivariable modeling, youth perceptions of their physical QoL associated with higher grade in school, greater friend and classmate support, and older parent age; youth psychosocial QoL with greater friend and classmate support, and with less disengaged coping; and youth height-related QoL and parental perceptions of youth psychosocial QoL with greater classmate support. Youth self-esteem associated with greater classmate support and taller mid-parental height. Youth height was not associated with QoL or self-esteem outcomes in multivariable regression. CONCLUSIONS: Perceived social support and coping skills, rather than height, were related to QoL and self-esteem in healthy short youth and may serve as an important potential area for clinical intervention.

Perceptions of Youth and Parent Decision-Making Roles Regarding Recombinant Human Growth Hormone Treatment.

Recombinant human growth hormone (rhGH) is prescribed to youth with growth hormone deficiency (GHD) to support normal growth and ensure healthy physical development, and to youth without GHD to address height concerns. Perceptions of youth involvement in rhGH treatment decisions have not been explored. This study aimed to examine perceptions of youth and parent roles in decisions around rhGH treatment. Youth (n = 22, 11.5 ± 2.0 years) who had undergone evaluation for short stature and their parents (n = 22) participated in semi-structured interviews after stimulation test results had been received. Interviews revealed the following themes: 1) parent provided youth with support; 2) parent facilitated youth's decision-making involvement; 3) youth had no role or did not remember their role; and 4) youth did not remember conversations with their parents or providers. Parents facilitated their children's involvement by sharing information and seeking their opinions. Whereas some participants described youth as having a substantial decision-making role, not all youth felt they were involved, and some youth could not recall conversations about rhGH. Parents can bolster youth involvement by having conversations using developmentally appropriate language, which is critical to youth feeling empowered and developing efficacy over their own care.

Perspectives on Remote Glucose Monitoring in Youth With Type 1 Diabetes.

OBJECTIVE: Continuous glucose monitoring (CGM) has become increasingly popular among youth with type 1 diabetes (T1D). Used with CGM, remote monitoring (RM) gives caregivers real-time access to patients' glucose values. Whereas RM may safeguard against hypo- and hyperglycemic events, little is known about how older children and adolescents, who are striving for independence, and their parents view the RM aspect of CGM. The goal of this study was to describe and explore parent and youth perceptions of RM. METHODS: Youth with T1D and their parents participated separately in semi-structured interviews 2 months after starting CGM. Questions focused on decisions to use and experiences with RM. RESULTS: Analysis of 43 parents and 41 youth (13.79 years ± 2.82) interviews revealed four themes, with 10 subthemes. Seven subthemes emerged in parent and youth interviews, and three emerged exclusively in parent interviews. The overarching themes included the impact of RM on (1) peace-of-mind, (2) parental anxiety, (3) communication; and addressed (4) technological limitations that prevented some from using RM. Regardless of youth age, youth and parents found comfort in parental knowledge of glucose values and parental abilities to assist youth (e.g., giving reminders to eat). Whereas RM could lead to conflicts due to excessive communication (e.g., texting), conflicts could be resolved through iterative parent-youth conversations. CONCLUSION: RM may facilitate youth independence by providing a way for them to stay connected to their support system while acquiring developmentally appropriate skills. However, families should have iterative discussions about boundaries to mitigate parental over-involvement.

"I Think Parents Shouldn't Be Too Pushy": A Qualitative Exploration of Parent and Youth Perspectives of Youth Decision-Making Involvement in Starting Continuous Glucose Monitoring.

PURPOSE: The purpose of this qualitative study was to explore parent and youth perspectives of the decision-making process to start continuous glucose monitoring (CGM). METHODS: Youth with type 1 diabetes and their parents were assessed with semistructured interviews before adding CGM to their regimen and 2 months after device initiation. Interviews focused on parent, youth, and provider decision-making roles and suggestions for enhancing youth decision-making involvement (DMI). Data were coded and analyzed using thematic analysis. RESULTS: Youth (N = 41; 13.7 ± 2.9 years) were categorized into decision-making roles: (1) youth primary decision maker (54.8%), (2) youth primary decision maker with parental influence (14.3%), (3) parent primary decision maker with youth agreement (26.2%), and (4) parent primary decision maker without youth agreement (4.8%). Participants described that clinicians provided information, recommended CGM, and gave support. Recommendations to enhance youth DMI included that youth should ask questions, express opinions, and do their own research. Providers should give unbiased information and use visual aids (eg, show the device and videos) to engage youth. CONCLUSIONS: Participants agreed that whereas youth should have a primary role in the decision about CGM, parental and provider support is critical. Parents and providers can facilitate dialogue by directly engaging with youth about their thoughts, feelings, and concerns. Provider use of visual aids may enhance youth engagement and expectations.