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Updated: Jan 18, 2026

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

Savithri Nageswaran1,2, Heather Dailey-Farley2, Shannon L Golden3

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Clinical Pediatrics
|January 16, 2026
PubMed
Summary

Caring for children with medical complexity presents significant logistical and emotional challenges for parents. Tailored, flexible outpatient care strategies are essential to support these families during crucial in-person clinical visits.

Keywords:
caregiver burdenchildren with disabilityhealth care deliveryoutpatient care

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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.