Caregiver Perspectives on Polypharmacy Management in Children With Medical Complexity

Children with medical complexity (CMC) often receive polypharmacy (≥5 concurrent medications), increasing the risk of medication-related problems. Little is known about how caregivers of CMC manage the responsibility of polypharmacy in outpatient settings. This study aims to use caregivers' lived experiences to develop a data-informed conceptual model of key factors influencing outpatient polypharmacy management.

This study recruited caregivers of CMC with polypharmacy receiving care at a tertiary pediatric complex care clinic using purposeful sampling. Grounded theory methodology was applied to semistructured interviews with caregivers to explore their subjective experiences managing polypharmacy. Interview guide development included the input of family partners. Constant comparative analysis via iterative open, axial, and selective coding was used to develop a novel grounded theory model. Negative case analysis and investigator triangulation bolstered methodological rigor.

Interviews with 21 caregivers revealed 4 overarching themes and 9 related subthemes. Major themes include: (1) considerable psychosocial burden of managing complex and high-stakes medication regimens, (2) variable quality of health care system interactions, and (3) need for adaptation to dynamic medication landscapes for CMC, which together converge to influence (4) day-to-day decision-making and home medication strategies impacting real-world regimen adherence. Themes inform the development of a model of factors that caregivers find most influential to polypharmacy management.

The resulting model underscores a need for patient- and caregiver-centered interventions to provide clinical pharmacotherapy support, reduce caregiver burden, and improve medication management processes among CMC.