495 - Researcher Perspectives of Facilitators and Barriers to Practice-Changing Research on Children with Medical Complexity

Publication Number: 1475.495

Kristina E. Malik, University of Colorado School of Medicine/Children's Hospital Colorado, Denver, CO, United States; Hannah Friedman, University of Colorado School of Medicine, Aurora, CO, United States; kathleen Huth, Boston Children's Hospital/Harvard Medical School, Boston, MA, United States; Kilby Mann, Children's Hospital Colorado, Auroa, CO, United States; Emily J. Goodwin, University of Missouri Kansas City, Children's Mercy Kansas City, Kansas City, MO, United States; Francine E.. Buchanan, SickKids Hospital, Mississauga, ON, Canada; Monica P. Jolles, University of Colorado, School of Medicine, Aurora, CO, United States

Background: Research on children with medical complexity (CMC), children with most severe chronic medical conditions, is rapidly expanding. Yet researching clinical care for CMC is complicated by heterogenicity of this population's underlying diagnoses and needs.

A new podcast (OPENPediatrics Complex Care Journal Club) has been interviewing researchers with publications that are practice-changing, value patient/family engagement, and relevant across CMC diagnoses. These conversations could highlight facilitators and barriers to research on CMC.

Objective: To explore researcher perspective on facilitators and barriers of research that changes practice in the clinical care of CMC.

Design/Methods: We conducted a qualitative content analysis of interview transcripts from a podcast about practice-changing research in complex care. The analysis was informed by a framework looking at contextual factors to facilitators and barriers (Consolidated Framework for Implementation Research, CFIR). Professional transcriptions are publicly available at podcast website, downloaded from April 2023 until March 2025. The interviews focus on: (1) gaps that prompted the study, (2) opportunities and challenges during the study, (3) implications for clinical practice, and (4) "lessons learned" to share with other researchers in this field.

A codebook was developed deductively, guided by CFIR, and then further in iterative open coding by two team members. Transcripts were coded in Atlas.ti with 20% double coding. The coded transcripts were then queried and summarized, and themes were developed through iterative discussion. The caregiver of a CMC with expertise on parent partnership helped with aim and theme development.

Results: A total of 24 transcripts with 47 interviewees were included (Table 1). Emerging themes that facilitated practice changing research on CMC include (Table 2): (1) Personal experience shaping research questions, (2) Multidisciplinary, meaningfully engaged research teams within supportive funders, networks, or organizations, (3) Flexibility in design to adapt to needs of end users, and (4) Turning barriers into facilitators. As the podcast focused on research that valued patient/family engagement, many of the multidisciplinary teams included persons with lived experience which was often multilevel and impactful through the complete research process.

Conclusion(s): Practice changing research on the care of CMC was facilitated by dynamic multidisciplinary teams and supportive organizations, inspired by personal experience, sought opportunities within challenges, and ensured products were adaptable to needs of end users.

Table 1. Characteristics of Participants of the Podcast and their Projects


Table 2. Thematic Quotations from Interviews on Podcasts