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Understanding the experiences and quality of life of people with incomplete spinal cord injury who can ambulate Jeawon, Murveena


Background: Spinal cord injuries can have profound long-term consequences. However, less is known about the experiences of people with incomplete spinal cord injuries who can ambulate. Objectives: 1) To identify the needs and strengths of people with incomplete spinal cord injury who can ambulate and explore potential supports, services, and programs that would help them in the community. 2) To examine associations between subjective quality of life and other socio-demographic variables in this population and to explore differences in experiences of people with different levels of quality of life (i.e., low, moderate, and high). Materials and methods: Study 1, was a qualitative descriptive study, and study 2 was a mixed-method study. Semi-structured interviews and standardized measures of function, health, mobility, and life satisfaction were used as the main means of data collection. In study 1 quantitative data were used descriptively, and in study 2, participants were categorized into three levels of quality of life, and the experiences of participants in these groups were explored quantitatively and qualitatively. Results: The 24 participants were 55 years old on average, with 54% being male. In study 1, we identified three themes: (1) ‘I really couldn’t go there’, described the physical and social barriers experienced by participants (2) ‘In this netherworld’ revealed participant’s desire for greater social understanding of incomplete spinal cord injury, and (3) ‘I just don’t quit’, displayed the perseverance that participants demonstrated following their injury. In study 2, the quantitative portion indicated that the variables male sex, having attended rehabilitation, and being married were strongly associated with increased quality of life. The qualitative portion revealed how people with a low quality of life felt that the neighborhood-built environment was not supportive. People with a low and moderate level of quality of life reported feeling devalued by able-bodied people and reported that their mobility was deteriorating over time. Conclusion: The study findings emphasize how changes to the built and social environment are needed to improve accessibility and promote the inclusion of people with incomplete spinal cord injuries who can ambulate.

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