Citation

Diviani N, Zanini C, Jaks R, Brach M, Gemperli A, Rubinelli S. Patient Educ. Couns. 2020; ePub(ePub): ePub.

Affiliation

Department of Health Sciences and Medicine, University of Lucerne, Frohburgstrasse 3, 6002 Lucerne, Switzerland; Swiss Paraplegic Research, Guido A. Zäch Strasse 4, 6207 Nottwil, Switzerland.

Copyright

(Copyright © 2020, Elsevier Publishing)

DOI

10.1016/j.pec.2020.02.024

PMID

32098740

Abstract

OBJECTIVE: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.

METHODS: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.

RESULTS: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health.

CONCLUSION: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. PRACTICE IMPLICATIONS: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.

Copyright © 2020 Elsevier B.V. All rights reserved.

Language: en

Keywords

Caregiver burden; Caregiver outcomes; Family caregivers; Health literacy; Information seeking; Paraplegia; Tetraplegia