Objectives: The objectives of this study were to describe what women with longstanding spinal cord injury (SCI) feel they are experiencing as they age, how they are coping and what they require in order to ensure their continued social and economic participation in society. Study design, methods and setting: A naturalistic approach was taken, incorporating three focus groups (n=10) and key informant interviews (n=19) of women with SCI ranging in age from 31 to 70 years and living in rural and urban communities in Ontario, Canada. Results: The women feel isolated and sense many of their key concerns are ignored or dismissed by health care and service providers. The common physical changes and concerns were gynecological/sexual and bowel and bladder issues. Socio-emotional changes with age included impact of their age-related changes on important relationships and re-evaluation of personal priorities. They articulated worries including declining health, increasing dependency and ®nancial stresses. Additional resources they need to age successfully include improved environmental accessibility, assistive devices, more¯exible and responsive attendant and household support, access to recreation and ®tness opportunities and peer and psychological support. Conclusions: Many of the issues raised by the women were consistent with the authors' previous examination of aging in men with SCI and women with disabilities. The most striking dierence was their profound sense of isolation and perceptions that health care and service providers were unprepared or unwilling to address the unique issues they face as women living and now aging with SCI. Sponsorship: This research was funded by the Ontario Neurotrauma Foundation.
While our understanding of aging and mortality in spinal cord injury is evolving, precise estimates are still not available for expectations of life and health following a spinal cord injury. In order to derive these estimates, information about mortality and health must be combined into a single estimate. Health expectancy estimates have been widely used in the literature of the last decade to try to understand the relationship between population health and survival, both in the general population and in special populations. This study brought the bene®t of this methodology to the question of long-term survival following spinal cord injury. Speci®cally, the study aimed to calculate life and health expectancy in a population of spinal cord injured individuals; and, to estimate the eect of factors associated with survival and health. The study involved a retrospective cohort, all of whom sustained a spinal cord injury between the ages of 25 and 34 years, and between 1945 and 1990. The study predicted a median survival time of 38 years post-injury, with 43% surviving at least 40 years. These ®ndings suggest an increase in life expectancy of about 5 years over previous research on the same cohort.1 Factors aecting survival were age at injury, level and completeness of lesion. Expectations of health found in the present study are similar to those found in studies of the general population.2 This study showed seven remaining years of poor health expected at injury, and ®ve remaining years expected at 40 years post injury, presumably occurring at the end of life.
Background: Despite evidence of the relationship between time use and health and well-being, and the World Health Organization's recognition of activity limitation as a measure of disability, there has been limited investigation into the activity patterns of persons with disabilities. Methods: Interviews and time diaries to provide preliminary descriptive and analytical information about the daily time use patterns of men with a spinal cord injury (SCI) living in the community (n=312) compared with the time use data of able-bodied men (n=3617) collected as part of the 1992 Canadian General Social Survey. The study also examined relationships between time use by men with SCI and selected factors (severity of disability and socioeconomic status). Findings: Statistically di erent time use patterns between the SCI and able-bodied subjects. The men with spinal cord injury spent on average 7.2 h in leisure activities (able-bodied men=6.0 h); 4.7 (7.7) h in productivity; 3.7 (2.3) h in personal care; and 8.5 (8.0) h sleeping. The SCI men's lesser productivity time was accounted for largely by the lack of time spent in paid work. The average time use of the SCI sample showed the most time spent in passive leisure pursuits such as watching TV and listening to the radio. The sample rated their satisfaction with their time use as mediocre, but levels of adjustment to disability were moderate to high. Regression analysis revealed that severity of disability (lesion level, functional independence, environment) did not predict the amount of time spent in personal care, productivity, leisure, or sleep. Socioeconomic status had a mild predictive relationship with time allocation. Implications: The ®ndings suggest men with SCI are socially isolated relative to their ablebodied peers. Recommendations are made and include both methodological considerations for further time use studies with persons with SCI, and policy recommendations. The latter focus on the need for rehabilitation, education and resources that go beyond functional independence such that persons with SCI can expand both their leisure and productivity roles and become better socially and economically integrated into society.
The study found that levels of independence and quality of life in the sample conformed closely to those found in other similar studies with the spinal cord injured population: 22% reported their own functional status as dependent, and 22% reported fair to poor life satisfaction. Expectations of independence appeared to decline steadily over the five decades studied, while expectations of modified independence increased proportionally. Estimates varied significantly for those with paraplegia vs. quadriplegia, and those with complete vs. incomplete lesions. Expectations of life satisfaction appeared to change after the 30 year mark; at that point, the balance changed so that expectations of dissatisfaction outweighed expectations of satisfaction. Multiple regression showed that independence was related to lesion level, completeness and recency of injury, and both independence and satisfaction were related to marriage and employment.
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