610 - Not Left to Their Own Devices: What Technology Dependent Pediatric Patients and Families Want Providers to Know

Poster Number: 610
Publication Number: 610.404

Nicole M. King, Stanford University School of Medicine, Menlo Park, CA, United States; Rebecca Blankenburg, Stanford University School of Medicine, Palo Alto, CA, United States; Ximena Sanchez Martinez, Stanford University, Redwood City, CA, United States

Background: Pediatric providers are increasingly likely to encounter device dependent children in a variety of clinical settings. Previous studies have identified a need for more education on medical devices in pediatric trainees, however perspectives and expectations of technology dependent patients and their parents have not been considered.

Objective: To explore the perspectives of technology-dependent children and their parents on what they wish their providers knew about medical devices.

Design/Methods: We conducted an IRB-approved study consisting of semi-structured interviews of technology dependent children and their parents on the use of medical devices, including successes, pitfalls, and expectations. Using a patient-as-partner framework, we developed interview questions through iterative review, with the goal that these perspectives will help guide curricular development. Interviews were recorded and transcribed verbatim. Two investigators independently coded the transcripts and reconciled codes to develop categories and themes using constant comparison. The third author reviewed themes for validation.

Results: 9 families of device dependent children were interviewed. Families consisted of the primary caregiver(s), and the child when appropriate. Preliminary themes include: 1) It takes a village. Parents rely on assistance from many people in different roles, from family members, to DME vendors, to clinical nurse specialists, on-call providers, and bedside staff. 2) Parents have expectations for different team members for their medical device needs. Key needs include: accessibility, communication, coordination, trust, and empathy. 3) Parents learn about the use and care of medical devices through both formal medical teaching and alternative methods, such as independent research, online forums and videos, observation, and personal experience. 4) Parents are the experts on their children, and will go to great lengths to care and advocate for their child. To address the many challenges they identify, parents do their own research, troubleshoot using a mental checklist, and develop creative solutions. 5) Parents express fear, frustration, and anxiety, but also relief, gratitude, and hope regarding many aspects of care for a child with a medical device.Conclusion(s): Families of device dependent children have unique perspectives and expectations that should be used to aid the development of curricula on medical devices for pediatric trainees.
NK Curriculum VitaeNKING CV.pdf