The experience of patients with ABI and their families during the hospital stay: A systematic review of qualitative literature

ABSTRACT

Background: Patients with acquired brain injury (ABI) and their families have unique experiences and needs during the hospital stay; yet, limited literature exists on this topic. The purpose of this systematic review was to compile and synthesize literature on the experience of patients with ABI and their families during the hospital stay.

Methods: A systematic review of qualitative studies was conducted by searching for studies from seven databases. Content analysis was used to analyse and synthesize studies’ findings separately for the patient and family experience.

Results: The initial search provided 2871 records. Ultimately, 11 studies relevant to the research question were included in this review. No studies were excluded based on critical quality appraisal. Findings on the patient experience showed patients had negative perceptions of the rehabilitation environment and a perceived need for information. Findings on the family experience included difficulty adjusting after the patient’s injury, a desire to be involved in the patient’s care, mixed feelings about staff support and a high perceived need for information.

Conclusions: Findings provide awareness for healthcare providers on the multifaceted experiences of patients with ABI and their families during the hospital stay, strategies to make care more patient- and family-centred and directions for future research.

KEYWORDS:

• Brain injuries
• hospitals
• patients
• caregivers

Acknowledgements

Special thanks to dissertation committee members: Barbara Bowers, PhD, RN, FAAN (Chair); Lyn Turkstra, PhD, CCC-SLP; Barbara King, PhD, NP; Molly Carnes, MD, MS; Audrey Tluczek, PhD, RN; and David Maiers, PT. Thank you to research assistant, Mitchell Thomas, for assistance with the literature search and review, quality assessment and data extraction.

Declaration of interest

The author reports no conflicts of interest. This research was funded by the National Institute of Nursing Research (NINR) and the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD) (PI, T. Oyesanya), Grant #F31NR015398; by the University of Wisconsin-Madison, School of Nursing; and by the NIH/NIGMS Initiative for Maximizing Student Development (PI, M. Carnes) Grant# R25GM083252. This project was partially supported by the Clinical and Translational Science Award (CTSA) program, through the NIH National Center for Advancing Translational Sciences (NCATS), grant UL1TR000427. The content is solely the responsibility of the author and does not necessarily represent the official views of the NIH.