Background: Frequently hospitalized patients face unique challenges in navigating health care systems. Although practice-, hospital-, and accountable care organization-level programs to address the needs of these patients exist, interventions have had mixed results, with only some demonstrating reduction in hospitalizations or costs. To best serve frequently hospitalized patients and improve future interventions, clinicians, leaders, and health systems must collectively appreciate patient perspectives regarding their illness, factors driving hospitalizations, and perceptions of external support systems upon which patients rely as they navigate chronic illness. In this qualitative study, we explore and describe frequently hospitalized patients’ perceptions of support they receive, both inside and outside the hospital setting.

Methods: As part of a larger study designed to understand the perspectives and experiences of frequently hospitalized patients, we conducted semi-structured, in-person interviews with 26 adult patients. These patients had at least two unplanned 30-day inpatient readmissions to general inpatient wards at an urban academic hospital within the prior 12 months. Transcripts were analyzed 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.

Results: 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 through encouragement and motivation). However, support was neither universal nor a given; study participants reflected how their medical needs may fragment previously supportive interpersonal relationships. Some described losing their support teams as family and friends appeared to pull away; others reported loss of support due to the death of family members or friends. Patients further discussed their experiences of receiving support (or not) via interactions and relationships facilitated by healthcare organizations, identifying both benefits and drawbacks to these exchanges.

Conclusions: We found that frequently hospitalized patients derive tangible, emotional and psychological support from diverse sources, but even previously strong sources of support can fracture over time. Clinicians caring for frequently hospitalized patients should deliberately seek to identify existing sources of patient support and actively cultivate each patient’s unique support network. At a system level, we recommend that programs for frequently hospitalized patients focus on partnership, trust building, and collaborating with patients to identify their goals of care and meet their own 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.