The lived experience of the hospital discharge “plan”: A longitudinal qualitative study of complex patients

The primary research team for this community-based project consisted of clinicians and community and academic researchers. The study was conducted in collaboration with housing, healthcare, and HIV service providers and was advised by 2 individuals with lived experience of discharge from Casey House. Community members with lived experience attended team meetings, provided feedback on all stages of the project (ie, interview guides, recruitment, analysis and dissemination), and helped facilitate community engagement sessions with other patients at the start and the end of the project.

Standard practice for discharge planning involves clinicians determining a tentative discharge date and identifying strategies to support the patient. Planning is informed by knowledge gathered by the interdisciplinary team throughout the admission, including social determinants of health (ie, housing, social support, food security). Patients are encouraged to invite an individual from their social support network to attend a discharge meeting, where the care team reviews goals for admission, course of treatment, referrals, and important follow-up dates.

We used a multi-case study approach to explore the discharge process and post-discharge period. A case was defined as the discharge and transition of a patient from hospital to community. Data were collected through serial interviews with patients (n = 4), medical chart abstraction, and review of discharge summaries. Serial interviews, although not frequently used in clinical research, have been proposed as a strong approach for exploring complex processes and to build trust between researcher and participant,¹⁹ both of which were relevant in this study. Patient interviews were conducted by the Master’s trained research coordinator (SM) using tailored semi-structured interview guides for 4 time points: before the discharge meeting (I1); after the discharge meeting but before discharge (I2); within a week of discharge (I3); and approximately 30 days after discharge (I4). Interviews were audio recorded and transcribed verbatim.

Cases were eligible if the patient had a general admission and a planned discharge to the community, and was able to communicate in English and direct his/her own care. Patient-initiated discharges and discharges to another healthcare facility were excluded. Casey House clinical staff approached consecutive potentially eligible patients for their willingness to speak with the researcher coordinator. The research coordinator met with patients to assess eligibility and obtain informed consent to participate. All participants provided informed written consent. The study was approved by the University of Toronto HIV Research Ethics Board.

Interview data, managed with MAXQDA software (VERBI GmbH, Berlin, Germany), were analyzed using a framework analysis approach.^20,21 At least 3 authors read each transcript in its entirety. Priority questions/topics identified a priori by stakeholders as important to inform change in care and practices were used as the first draft of the coding framework. The framework was modified through team discussion in the analysis phase to integrate emerging themes. Participant demographic and clinical data were extracted using a structured data collection form.

Preliminary data analysis was completed for the separate data sources including inter- and intra-case comparisons: exploring how experiences and perceptions changed over time and themes that emerged across cases at the same time point. Data sources were combined to strengthen the understanding of the cases and identify relationships and discrepancies across sources.²² Audit trails, reflexive journaling, group coding and analysis meetings and member-checking, were used to enhance analytical rigor.

The results focus on the patient experience of the “discharge plan” and are presented in terms of 3 pre-identified categories: 1) social support; 2) discharge process and transition experience; and 3) post-discharge follow-up and referrals; and 1 emergent theme, patient priorities.

Participants experienced complex medical and psychosocial challenges (Table 1, participant characteristics). All participants were living with HIV plus a mean of 5 additional comorbidities, the most common being hepatitis C (n = 3), chronic obstructive pulmonary disease (n = 2), herpes (n = 2) and opportunistic infections (n = 2). Eight of 9 participants had a history of an Axis 1 diagnosis, most commonly mood disorder (n = 4). Substance use was identified in all participants. An overview of each case is presented in Table 2.

Social Support

For the purposes of this paper, we define “social support” as the emotional or instrumental assistance an individual perceives and experiences from people in his/her self-identified network (ie, family, friends). Participants’ discharge-related experience of social support did not align, in most cases, with the information from their medical charts or their expectations. At admission, 8 of 9 participants identified at least 1 person in their social support network, yet only 1 participant had someone attend the discharge meeting. One participant said she had expected “my daughter, my mother, my brother, somebody. At least somebody. But they never show up.” (P5, I2).