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Community Caregivers' Perspectives on Health IT Use for Children With Medical Complexity: Qualitative Interview

Farah Elkourdi¹, Onur Asan¹

¹Department of Systems and Enterprises, Stevens Institute of Technology, Hoboken, NJ, United States.

JMIR Pediatrics and Parenting

|February 10, 2025

Summary

Community caregivers highlight the need for better Health IT (HIT) to support children with medical complexity. Their insights can guide the development of user-centered tools to improve care coordination and quality of life.

Keywords:

artificial intelligence children with medical complexity family-centered care health care software solutions health information technology mobile phone pediatric care

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Published on: July 27, 2018

Area of Science:

Pediatric Healthcare
Health Informatics
Caregiver Support

Background:

Children with medical complexity (CMC) have extensive healthcare needs and require coordinated care.
Family caregivers provide essential daily support and bridge gaps in care, especially in vulnerable populations.
Health IT (HIT) offers potential to enhance communication, safety, and decision-making for CMC.

Purpose of the Study:

To identify the Health IT needs and preferences of children with medical complexity from the perspective of community caregivers.
To understand caregiver challenges and insights for developing effective HIT solutions.

Main Methods:

Conducted semistructured interviews with 12 formal community caregivers of CMC.
Utilized inductive thematic analysis to identify HIT challenges and preferences.
Focused on caregivers from a parent advocacy network on the US East Coast.

Main Results:

Identified four key themes: telehealth's impact during COVID-19, suggested HIT tools, desired HIT features, and transition to adult care.
Highlighted caregiver roles in advocacy, coordination, and information provision.
Detailed specific design features for user-centered HIT.

Conclusions:

Emphasizes the critical need for developing and enhancing HIT for CMC care.
Identified themes provide design guidelines for user-centered HIT tools.
Telehealth and mobile health apps show promise for improving CMC care management and quality of life.