Frequently hospitalized patients’ perceptions of support received as they cope with chronic illness: Presenter(s): Kenzie Cameron, Northwestern University Feinberg School of Medicine, United States

Frequently hospitalized patients face unique challenges in navigating health care systems. Although programs exist to address patients’ needs, interventions primarily arise from the health system without significant patient input. To best provide patient-centered care and improve future interventions, clinicians, leaders, and health systems collectively must appreciate patient perspectives of their illness, and of support systems upon which they rely. We sought to explore and describe frequently hospitalized patients’ perceptions of support they receive, both inside and outside the hospital setting. We conducted semi-structured, in-person interviews with 26 purposively sampled adult patients. We analyzed transcripts using an iterative inductive team-based approach with team members from clinical and research backgrounds. Following descriptive (first-cycle) and pattern (second-cycle) coding, constant comparison was used to compare responses across participants. We identified three primary themes pertaining to patients’ perceptions of support. Patients reported that family and friends provide substantial ongoing multifaceted social support (e.g., tangible, instrumental support via assistance with activities of daily living; emotional support). However, support was neither universal nor a given; participants reflected how their medical needs may fragment previously supportive interpersonal relationships. Patients discussed experiences of receiving support (or not) via interactions and relationships facilitated by healthcare organizations, identifying benefits and drawbacks to these exchanges. Frequently hospitalized patients receive support from diverse sources, but even previously strong sources of support can fracture over time. Clinicians should deliberately seek to identify existing sources of support and actively cultivate patients’ support networks. At a system level, we recommend programs focus on partnership, trust building, and collaboration with frequently hospitalized patients to identify their goals of care and health priorities. Deliberately fostering support networks – through formal support groups or other means of building interpersonal relationships and trust – may be an important facet in improving care for this vulnerable population.