Caregivers' perceptions of nurse-led discharge education interventions: Knowledge needed for adequate care of a technology-dependent infant in the home setting

Thesis advisor: Pamela J. GraceBackground: Advances in clinical care over the past 40 years have saved the lives of many infants who previously would not have survived. However, a substantial proportion of these children need on-going technological support and are cared for at home by family caregivers with or without the assistance of home care services. Existing studies describe the experience of family caregivers of technology-dependent children post-discharge, but there is a gap in knowledge related to caregivers’ perceptions of nurse-led discharge teaching. Purpose: To describe caregivers’ perceptions of nurse-led discharge education designed to prepare them to care for their technology-dependent infant in the home setting and to uncover factors that facilitate or hinder its effectiveness. Method: A qualitative descriptive study design was employed to explore caregivers’ perceptions of nurse-led discharge education efforts. Demographic data was collected prior to conducting a semi-structured interview. Interview data were analyzed in an iterative fashion using qualitative content analysis. Sample Recruitment was via purposive sampling aimed to find caregivers of technology-dependent infants under the age of three. Nine participants completed the study. Results: An overarching theme, caregiver learning and self-advocacy is enhanced by positive nurse/caregiver relationships and team cohesion, especially during anxiety-producing transitions in care, emerged from the data. The overarching theme encompasses five major themes and several major themes. The five main themes are: the nurse/caregiver relationship enhances learning; the complexity of care presents challenges to the learning process; team performance affects caregivers’ level of anxiety/uncertainty; caregivers’ level of expertise improves self-advocacy; and transitions in care settings contribute to caregiver anxiety. Conclusion: Insights that contribute to nursing knowledge of the caregivers’ experience of nurse-led discharge education and their perceptions of factors that help or hinder their learning were gained. Implications for nursing include the importance of caregivers’ involvement in care team discussions, the necessity of basing teaching approaches and materials in knowledge of best practices, and improved care coordination and discharge planning. Further nursing research, that can generalize findings and generate interventions is also needed to improve the care of this population.Thesis (PhD) — Boston College, 2018.Submitted to: Boston College. Connell School of Nursing.Discipline: Nursing