Youth’s Perspective of Responsibility: Exploration of a Construct for Measurement with Youth with Developmental Disabilities

Abstract

Aims: There is a need to develop self-reports that measure youth’s responsibility for major life tasks. We examined if the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test’s (PEDI-CAT) operationalization of responsibility is salient to youth with developmental disabilities (DD). The PEDI-CAT defines responsibility as, “the extent to which the young person…take[s] control over organizing and managing major life tasks.” Methods: During six focus groups (n = 43), youth generated examples of behaviors and actions that demonstrated responsibility. Data were coded as “responsibility” or “discrete skills” per PEDI-CAT definitions. We reviewed examples in both categories and compared and contrasted how youth described responsibility. Results: Youth’s descriptions of responsibility aligned with the PEDI-CAT’s responsibility construct 42.75% of the time. In these instances, youth perceived themselves as causal agents who had to make decisions and self-regulate to manage and organize major life tasks. Otherwise, youth described themselves as causal agents who adhered to rules, social norms, and expectations of others during the execution of discrete skills. Conclusions: Youth perceive themselves as responsible, causal agents during both the coordination and management of major life tasks and during the execution of discrete skills. As this is not aligned with the PEDI-CAT’s operationalization of responsibility, there is a need to further explore youth’s perceptions of responsibility prior to developing a self-report.

KEYWORDS:

• Adolescent
• assessment
• developmental disabilities
• patient reported outcome measures
• self-report

Acknowledgments

We would like to recognize Jessica DeMarinis for her assistance in collecting and analyzing the data and Melissa Regan for her assistance with data collection. We would also like to thank the PEDI-PRO youth team for their input and assistance with data collection: Alice, Brendan, Byron, Jacob, Marianne, and Sierra.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Notes

1 This is the mandated period of transition planning for students with disabilities in the United States (United States Department of Education and Office of Special Education and Rehabilitation Services, 2017).

2 Skills are observable actions that result from the application of body structures and function during activity completion (AOTA, 2014).

Additional information

Funding

This research was supported through a grant from the National Center Medical Rehabilitation Research, National Institute of Child Health and Human Development/National Institute Neurological Disorders and Stroke, National Institutes of Health K12 HD055931.

Notes on contributors

Adam J. Swatt

Adam Swatt is an occupational therapist at Kennedy Children’s Center. At the time of conducting this research, he was an occupational therapy student at Boston University.

Ariel E. Schwartz

Ariel Schwartz is a PhD candidate in Rehabilitation Sciences.

Jessica M. Kramer

Jessica M. Kramer is an Associate Professor and director of the Youth and Young Adult Empowerment Leadership and Learning (YELL) Lab.