Youth and parent perceptions of youth decision-making roles regarding evaluation for short stature

ABSTRACT

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.

Acknowledgments

We are grateful to all the children and parents who took the time to participate in this study. We also thank Reyneris Robles and Julia Halas who assisted in participant recruitment, enrollment and interviews.

We thank the children and parents who took the time to participate in this study.

Disclosure statement

AG received an investigator-initiated research grant from and served as a consultant to Pfizer, Inc. The other authors have no potential conflicts of interest relevant to this study to disclose.

Author contributions

ERF analyzed the data and drafted the initial manuscript. EAF collected the data, analyzed the data, and reviewed and revised the manuscript. AG conceptualized and designed the study, designed the data collection instruments, supervised data collection, and reviewed and revised the manuscript. VAM conceptualized and designed the study, designed the data collection instruments, supervised data collection, analyzed the data, and reviewed and revised the manuscript. All authors read and approved the final manuscript.

Ethical approval

This study was approved by the Institutional Review Board at the Children’s Hospital of Philadelphia (protocol code 18–015328) and was conducted in accordance with U.S. guidelines for the ethical conduct of human subjects research.

Informed consent

Consent and assent were obtained in accordance with IRB protocols for parent and youth participants, respectively.

Additional information

Funding

This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the National Institutes of Health (NIH) under Grant 1 R01 HD097129 awarded to AG and VAM; and the Maternal & Child Health Bureau under Grant T71MC30798. The content of this manuscript is solely the responsibility of the authors and does not necessarily represent the official views of the NICHD, NIH or MCHB.