Experiences With Navigating and Managing Information in the Community Following Spinal Cord Injury.

Abstract

Background: People living with spinal cord injury (SCI) have reported difficulties managing information in the community, which can negatively impact their functional independence and ability to prevent secondary complications. Objective: This exploratory qualitative study aimed to describe the experiences of people living with SCI with navigating and managing information in the community from their perspective. Methods: Participants were recruited through the Australian Quadriplegic Association. Twenty-two semi-structured in-depth interviews were conducted with purposively selected participants to ensure representation of age, gender, SCI level, and compensation status. Data were thematically analyzed using a framework approach. Results: People living with SCI reported using multiple, complementary sources of information to prevent and manage secondary conditions. Over time, they learned to appraise the content, relevance, timing, and sources of information. Information delivered by health professionals in the rehabilitation setting was appraised as lacking personalization, but it acted as a springboard to search for more relevant information. Participants described the process of becoming experts about their condition to overcome the lack of knowledge of many general practitioners, guide their own care, and act as a source of information for others. Due to a lack of information provision, some participants missed health improvement opportunities and experienced frustration at the uncertainty of their future with SCI. Conclusion: Greater support is required for individuals with SCI to navigate information sources in the community. Rehabilitation is an opportune time to provide education related to finding and appraising information. Improved access to community health providers with SCI knowledge is also required.