Frequently Hospitalized Patients’ Perceptions of Factors Contributing to High Hospital Use
BACKGROUND: A small proportion of patients accounts for a large proportion of hospitalizations.
OBJECTIVE: To obtain patients’ perspectives of factors associated with the onset and continuation of high hospital use.
DESIGN: Qualitative research study where a research coordinator conducted one-on-one semi-structured interviews. A team of researchers performed inductive coding and analysis.
SETTING: A single urban academic hospital.
PARTICIPANTS: Patients with two-unplanned 30-day readmissions within 12 months and one or more of the following: ≥1 readmission in the last six months, a referral from a clinician, or ≥3 observation visits.
RESULTS: Overall, 26 participants completed the interviews. Four main themes emerged. First, major medical problems were universal, but the onset of frequent hospital use varied. Second, participants perceived fluctuations in their course to be related to psychological, social, and economic factors. Social support was perceived as helpful and participants benefited when providing social support to others. Third, episodes of illness varied in onset and generally seemed uncontrollable and often unpredictable to the participants. Fourth, participants strongly desired to avoid hospitalization and typically sought care only after self-management failed.
CONCLUSIONS: Emergent themes pointed to factors which influence patients’ onset of high hospital use, fluctuations in their illness over time, and triggers to seek care during an episode of illness. These findings enable patients’ perspectives to be incorporated into the design of programs serving similar populations of frequently hospitalized patients.
© 2019 Society of Hospital Medicine
Participant Enrollment and Data Collection
We created an interview guide based on the research team’s experience with this population, a literature review, and our research question (See Appendix).8,9 A research coordinator approached eligible participants during their hospital stay. The coordinator explained the study to eligible participants and obtained verbal consent for participation. The research coordinator then conducted one-on-one semi-structured interviews. Interviews were audio recorded for subsequent transcription and coding. Each interview lasted approximately 45 minutes. Participants were compensated with a $20 gift card for their time.
Analysis
Digital audio recordings from interviews were transcribed verbatim, deidentified, and analyzed using an iterative inductive team-based approach to coding.10 In our first cycle coding, all coders (KJO, SF, MMC, LO, KAC) independently reviewed and coded three transcripts using descriptive coding and subcoding to generate a preliminary codebook with code definitions.10,11 Following the meetings to compare and compile our initial coding, each researcher then independently recoded the three transcripts with the developed codebook. The researchers met again to triangulate perspectives and reach a consensus on the final codebook. Using multiple coders is a standard process to control for subjective bias that one coder could bring to the coding process.12 Following this meeting, the coders split into two teams of two (KJO, SF, and MMC, LO) to complete the coding of the remaining transcripts. Each team member independently coded the assigned transcripts and reconciled their codes with their counterpart; any discrepancies were resolved through discussion. Using this strategy, every transcript was coded by at least two team members. Our second coding cycle utilized pattern coding and involved identifying consistency both within and between transcripts; discovering associations between codes.10,11,13 Constant comparison was used to compare responses among all participants, as well as between sickle-cell and nonsickle-cell participants.13,14 Following team coding and reconciling, the analyses were presented to a broader research team for additional feedback and critique. All analyses were conducted using Dedoose version 8.0.35 (Los Angeles, California). Participant recruitment, interviews, and analysis of the transcripts continued until no new codes emerged and thematic saturation was achieved.
RESULTS
Participant Characteristics
Overall, we invited 34 patients to be interviewed; 26 consented and completed interviews (76.5%). Six (17.6%) patients declined participation, one (2.9%) was unable to complete the interview before hospital discharge, and one (2.9%) was excluded due to disorientation. Demographic characteristics of the 26 participants are shown in Table 1.
Four main themes emerged from our analysis. Table 2 summarizes these themes, subthemes, and provides representative quotes.
Major Medical Problem(s) are Universal, but High Hospital Use Varies in Onset
Not surprisingly, all participants described having at least one major medical problem. Some participants, such as those with genetic disorders, had experienced periods of high hospital use throughout their entire lifetime, while other participants experienced an onset of high hospital use as an adult after being previously healthy. Though most participants with genetic disorders had sickle cell anemia; one had a rare genetic disorder which caused chronic gastrointestinal symptoms. Participants typically described having a significant medical condition as well as other medical problems or complications from past surgery. Some participants described having a major medical problem which did not require frequent hospitalization until a complication or other medical problem arose, suggesting these new issues pushed them over a threshold beyond which self-management at home was less successful.
