Older adults with long-term spinal cord injury

Abstract: As a result of advances in healthcare and rehabilitation, many people with spinal cord injury (SCI) have lived several decades with their injury. Knowledge of living with long-term SCI into older age is limited, despite an increased focus on aging with SCI in research and clinical practice.The overarching aim of this thesis was to describe and understand the life situation of older adults with long-term SCI in southern Sweden, with a specific focus on secondary health conditions (SHCs), activity limitations, depressive symptoms, participation in leisure time physical activity (LTPA) and life satisfaction.This thesis is based on the first data collection of the Swedish Aging with Spinal Cord Injury Study (SASCIS), a longitudinal cohort study of persons aged 50 years or older and at least 10 years after SCI. Associations between variables were investigated using multivariable linear regression analyses.The 123 participants (36 women, 87 men) in the SASCIS had a mean age of 63 years and a mean time since injury of 24 years. Injury levels ranged from C1 to L5, with 62% traumatic injuries and 31% complete injuries. A large majority (88%) used mobility devices, 53% were living in a relationship and 35% were working full-time or part-time. Bowel-related and bladder-related problems were reported by 32% and 44%, respectively, and 44% reported spasticity. Two thirds experienced moderate to severe pain in everyday life. Activity limitations, (i.e.,physical independence), were on average moderate. A higher level and more severe SCI and spasticity were significantly associated with more activity limitations, explaining 68% of the variance.A total of 5% were regarded as having probable depression and 29% had clinically relevant depressive symptoms. Sense of coherence (SOC), the coping strategy Acceptance, neuropathic pain and LTPA explained 53% of the variance in depressive symptoms. A stronger SOC was the strongest explanatory factor for fewer depressive symptoms. The on average strong SOC indicated favorable adjustment to living with SCI.Participation in LTPA was low and almost one third did not participate in any LTPA. Sociodemographics, injury characteristics and SHCs explained less than 14% of the variance in LTPA participation. The use of a powered mobility device exhibited the strongest association with less participation in LTPA.The participants rated their life satisfaction just above the midpoint between satisfied and dissatisfied with life. Sociodemographics, injury characteristics and SHCs explained 38% of the variance in life satisfaction, where having a partner was the strongest contributor to a high level of life satisfaction.In conclusion, older adults with long-term SCI in southern Sweden exhibit a relatively high level of physical independence, a low presence of probable depression, a strong SOC and are generally satisfied with their lives. Many do not reach the amount or intensity of LTPA to achieve fitness benefits, and more research is needed to identify modifiable factors that can enhance their participation in LTPA. In clinical practice, pain and depressive symptoms should be evaluated, and participation in LTPA assessed and encouraged. Measuresthat strengthen psychological resources, provide adequate pain management and encourage participation in LTPA may support mental health. The results serve as a starting point for an increased understanding of the life situation of older adults with long-term SCI in Sweden, and can be used to inform rehabilitation planning and provide routines for follow-up.