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OBJECTIVE: To ascertain patient and caregiver satisfaction with an individualized case management intervention to improve transition from inpatient rehabilitation care to the community after traumatic brain injury (TBI). SETTING: Participants from 6 National Institute on Disability, Independent Living, and Rehabilitation Research-funded TBI Model Systems sites in the United States. PARTICIPANTS: Adult, English-speaking patients with TBI who had moderate-to-severe TBI and were discharged from a TBI Model Systems site and who were in the intervention arm of the Brain Injury Rehabilitation: Improving the Transition Experience pragmatic clinical trial, as well as their caregivers. DESIGN: A survey of participants in the intervention arm, which included an individualized case management program administered by a TBI Care Manager (TCM) who facilitated resource connection, education, and support. MAIN MEASURES: Satisfaction with intervention was measured through Likert-scaled and open-ended questions. The survey was administered verbally through telephone, audio-recorded, and transcribed. Descriptive statistics were calculated for categorical variables, and content analysis was conducted for open-ended responses. RESULTS: Patient and caregiver participants were satisfied with the intervention and highlighted the benefits of the interpersonal and practical support provided by the TCM. Participants identified the need for a more intensive intervention and clear expectations of the TCM role, as well as gaps in available medical and rehabilitation services in the community, as areas for improvement. CONCLUSION: Patients with TBI and their caregivers reported satisfaction with the individualized case management program in supporting their transition from inpatient rehabilitation to the community. Further research is needed to understand the impact on outcomes.
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OBJECTIVES: Evaluate clinical outcomes of stroke survivors in Peru discharged with artificial nutrition via a feeding tube (FT), and explore perspectives and experiences of these patients and their caregivers. METHODS: Retrospective chart review to describe the prevalence of FT placement and characteristics of patients admitted with stroke to the Instituto Nacional de Ciencias Neurológicas in Lima, Peru between January 2019 and 2021. Follow-up calls to stroke survivors discharged home with FTs or their caregivers included quantitative and qualitative questions to assess long-term outcome and explore perspectives around poststroke care and FT management. We analyzed quantitative data descriptively and applied thematic analysis to qualitative data using a consensus-driven codebook. RESULTS: Of 812 hospitalized patients with stroke, 146 (18%) were discharged home with FT, all with nasogastric tubes (NGTs). Follow-up calls were performed a median of 18 months after stroke with 96 caregivers and three patients. Twenty-five patients (25%) had died, and 82% of survivors (n = 61) remained dependent for some care. Four themes emerged from interviews: (1) perceived suffering (physical, emotional, existential) associated with the NGT and stroke-related disability, often exacerbated by lack of preparedness or prognostic awareness; (2) concerns around compromised personhood and value-discordant care; (3) coping with their loved-one's illness and the caregiving role; and (4) barriers to NGT care and skill acquisition. CONCLUSION: We identified a high burden of palliative and supportive needs among severe stroke survivors with NGTs and their caregivers suggesting opportunities to improve poststroke care through education, communication, and support.