Outcomes and Experiences of Patients and Their Caregivers After Severe Stroke Requiring Tube Feeding in Peru

Abstract

ObjectivesEvaluate 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. MethodsRetrospective 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. ResultsOf 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. ConclusionWe 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.