A Journey from Hospital to Home: A Grounded Theory Study of Family Caregivers of Hospitalized Persons with Cognitive Impairment

ABSTRACT Background: Hospitalization rates for persons with cognitive impairment are projected to increase in Taiwan. They are more likely to use inpatient services, psychotropic drugs, and have higher in-hospital mortality than persons without cognitive impairment. When this population is hospitalized, their family caregivers often experience strain, anxiety, and stress in their relationships with the care recipient and healthcare providers. Objectives: This study purposes were: (1) to explore experiences of family caregivers of persons with cognitive impairment during hospitalization, and (2) to develop a model explaining the patientcaregiver dyads’ acute hospitalization and discharge process from the caregivers’perspectives. Methods: Grounded theory was used to generalize a model. We recruited 11 caregivers and 10 persons with cognitive impairment. Data were collected in individual semi-structured interviews with caregivers. Interviews occurred during patients’ hospital stay or at home in the first year of discharge. Data were audio-taped and analysed by content analysis and constant comparative analysis. Results: The dyads’ hospitalization and post-discharge experiences were captured by four main themes: 1) early planning, 2) hospitalization issues piling up, 3) preparing for discharge, and 4) post-discharge experiences. During early planning, caregivers prepared for postdischarge caregiving and performed health-related and support tasks for the patient. During hospitalization, issues piled up, e.g. i.e. patients’ challenging behaviours, unfamiliar hospital environment, difficulty distinguishing patients’ delirium from cognitive impairment, and dissatisfaction with nursing care. When preparing for discharge, caregivers were concerned about the patients’ readiness for discharge and their self-efficacy for managing patients’ needs. If patients were not adequately prepared to return home, after discharge the patients’ condition rapidly spiralled down leading to unplanned re-admissions, which negatively affected caregivers’ health. Conclusions: Caregivers and cognitively impaired patients were challenged by the patients’ hospitalization due to factors that could have been minimized by skilled nursing dementia care. Nursing education to improve caregivers’ self-efficacy in patient care, could also have reduced postdischarge challenges.