Abstract
Little is known about time-use related to health management of individuals with tetraplegia (motor and/or sensory loss originating in the cervical spine) and the influence on participation in occupations. The purpose was to explore the time-use of an individual with tetraplegia to understand factors that contributed to changes in health-management routines over time. Narrative inquiry was used to collect data via observation, time-use log, and interviews. Five interpretive stories emerged: Caregivers, Relationships, and Learning Self-Efficacy; Framing the Morning Routine with Positive Thinking; Caregivers Become My Hands: The Art of Doing; Discovering Meaning and Life-Purpose; and Schedules and Waiting: Disability Shaping Occupation and Time-use. The stories illustrated how situational contexts disrupted his engagement in routines and reliance on caregivers. These findings may help clinicians better understand the lived experience of clients with tetraplegia to design interventions that appreciate the changing nature of disability over time.
Plain Language Summary Title
People with spinal cord injuries, particularly injuries affecting all four limbs and torso, experience significant changes to how they manage their health and engage in activities of daily living. People living with spinal cord injury may require a caregiver to perform basic tasks like dressing. Time-use in this group of people is understudied, so little is known about how the time spent on health management may inhibit or support participation in other meaningful activities. The purpose of this study was to explore in depth the experiences of one man living with spinal cord injury, to learn more about time-use trade-offs he may experience, and to identify factors that contribute to his use of time. The participant, a man who had lived with spinal cord injury for over 20 years and lived independently with the help of caregivers, collaborated with the researcher to complete a time log, allowed the researcher to observe him in daily tasks, and participated in interviews about his time-use. The researcher compiled all data and explored it using a framework called narrative inquiry, which consisted of organizing the participant’s experiences into meaningful stories. The study resulted in five main stories. Each story included many examples about his relationship with his caregivers and how they impacted his perception of time and independence; his need to use positive thinking to get through his morning routine due to pain and extended time; his use of caregivers as his hands to engage in meaningful activities; how he discovered his purpose in life over time since his injury; and the extensive time he spends waiting for caregivers and working on a schedule to engage in work and leisure. His experiences will help rehabilitation professionals like occupational therapists to better understand the actual lives of people living with spinal cord injury to design better interventions to help them maximize their time-use related to health management.
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