Research Article: Measures for Persons with Spinal Cord Injury to Monitor Their Transitions in Care, Health, Function, and Quality of Life Experiences and Needs: A Protocol for Co-Developing a Self-Evaluation Tool
Abstract:
Evaluating the experiences of persons with spinal cord injury (PwSCI) regarding their transitions in care and changes in health, function, and quality of life is complex, fragmented, and involves multiple tools and measures. A staged protocol was implemented with PwSCI and relevant expert stakeholders initially exploring and selecting existing measures or tools through a modified Delphi process, followed by choosing one of two options. The options were to either support the use of the 10 selected tools from the Delphi method or to co-develop one unique condensed tool with relevant measures to evaluate all four domains. The stakeholders chose to co-develop one tool to be used by persons with SCI to monitor their transition experiences across settings and care providers. This includes any issues with care or support they needed to address at the time of discharge from acute care or rehabilitation and in the community at 3, 6, and 12 months or longer post-discharge. Once developed, the tool was made available online for the final stage of the protocol, which proposes that the tool be reliability tested prior to its launch, followed by validation testing by PwSCI.
Introduction:
As more is known through studies and personal stories regarding the complex nature of spinal cord injuries (SCI), both traumatic and non-traumatic, more is understood regarding the long-term impacts on persons with SCI (PwSCI) and their physical, psychological, social, and economic wellbeing [1,2,3,4,5,6,7]. Physically, SCI permanently transforms an individual’s life through impacts on motor, sensory, and autonomic body systems [8], resulting in different impairments in mobility, bowel and bladder functions,…
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