JMIR Publications

ABSTRACT

Background:

Children with medical complexity (CMC) represent a unique pediatric population requiring extensive healthcare needs and care coordination. CMC have multiple significant chronic health problems that affect multiple organ systems and result in functional limitations, high healthcare need or utilization, and often the need for or use of medical technology , and need the total care for activities of daily living, much of which is provided in-home by family and caregivers.

Objective:

In this study, we identify the Health Information Technology (HIT) needs and preferences for CMC from the perspective of community caregivers.

Methods:

We conducted semi-structured interviews (n = 12) with community caregivers of CMC populations from the Parent Advocacy Network (SPAN). Interviews were recorded via Zoom and then transcribed. A thematic analysis was conducted to reveal the technology challenges and preferences to improve CMC care.

Results:

We categorized the interview results into themes and subthemes. There are four main themes which are (1) telehealth transforming care for CMC during COVID, (2) suggested tools and technologies for CMC care, (3) HIT features preferences and (4) transition to adult care.

Conclusions:

The study emphasizes the need for developing and enhancing HIT for CMC care. Telehealth and mobile health apps could improve care management and quality of life for CMC patients.