"It's a Production": Bringing Children With Medical Complexity to In-Person Clinic Visits

Area of Science:

• Pediatrics
• Health Services Research
• Qualitative Research

Background:

• Caring for children with medical complexity (CMC) presents substantial challenges for parents and caregivers.
• Outpatient clinical visits are vital for the ongoing care of CMC.
• Understanding caregiver experiences during in-person visits is crucial for improving care delivery.

Purpose of the Study:

• To explore the experiences of caregivers of children with medical complexity during in-person outpatient clinical visits.
• To identify challenges, coping strategies, and desired improvements in outpatient care for CMC.

Main Methods:

• Qualitative study using semi-structured interviews with 23 caregivers of CMC in North Carolina.
• Purposive sampling to include diverse populations (race, location, age, telehealth use, visit frequency, language).
• Thematic analysis of transcribed interview data.

Main Results:

• Four key themes emerged: logistical challenges, negative impacts on families and caregiver stress, caregiver-developed optimization strategies, and the need for individualized, flexible outpatient care.
• Caregivers face significant hurdles in managing in-person visits, leading to stress and impacting family well-being.
• Caregivers actively employ personal strategies to navigate these challenges.

Conclusions:

• Healthcare providers and systems must acknowledge and address the unique needs and challenges faced by families of CMC.
• Implementing individualized and flexible outpatient care models can mitigate the difficulties associated with in-person visits.
• Offering choices and support to caregivers is essential for optimizing the care experience for children with medical complexity.