STUDY UNDER DEVELOPMENT #3:
Participation, Subjective Well Being, Health, and Spinal Cord Injury:
A 35-Year Longitudinal Study
Submitted to the National Institute for Disability and Rehabilitation Research (NIDRR) of the Office of Special Education and Rehabilitative services (OSERS) United States Department of Education.
The purpose of this 35-year longitudinal study is to identify the natural course of changes in participation, health, and subjective well-being among 5 cohorts of participants with spinal cord injury (SCI). Data were first collected in 1973 from 256 participants, 78 of whom have participated throughout the study. Using a revolving panel longitudinal design, participants are followed over time with new participant samples added to counter attrition. To date, there have been a total of 2,208 different participants over the 6 times of measurement, including nearly 100 who have lived 40 or more years with SCI. The proposed study will be the seventh stage of data collection and will not only address the natural course through analysis of both cross-sectional and multiple longitudinal elements, but also special issues including quality of life and termination of employment, change in living circumstance to a more restrictive environment, and the role of environmental factors on stability of health and quality of life.
There will be 3 primary activities: (1) Finalization of instrumentation, based on consumer panel recommendations and pilot testing; (2) Primary data collection; and (3) consumer initiated development of recommendations for healthy living with aging for consumers and policy recommendations for rehabilitation professions and legislators. The consumer panel will meet throughout the study, making recommendations at each stage of activities. At the beginning of the study they will review previous findings and the instrument package in order to eliminate redundant or unimportant measures or recommend additional constructs, and review the data collection protocol to insure the procedures are consistent with participant needs (e.g., format, instrument length).
For the primary data collection, we will survey the 1,568 respondents from the last follow-up using the Life Situation Questionnaire (LSQ-R) which has been used throughout the study and measures biographic and injury factors, activities of daily living (ADLs), living circumstances, employment, participation, health, and subjective well-being (life satisfaction and self-reported problems). We estimate 1,125 responses. Additional instruments will be used to measure depressive symptoms, participation, health outcomes, environment, pain, and alcohol history. Additional measures of coping and social support will be added to the current stage of data collection. These represent a combination of core measures dating back to the first time of measurement in 1973 and newer measures that have been added regularly since that time to address more diverse issues. Several sets of data analyses will be conducted, including sequential designs that combine cross-sectional and longitudinal elements, as there are essentially several embedded longitudinal designs (i.e., 5, 10, 15, 20, 24, 35 years).With the direct assistance of the consumer specialist and consumer panel, we will identify policy recommendations at the individual (recommended practices), rehabilitative (programmatic needs), and legislative-federal level (allocation of funds in areas that will promote better outcomes). A consumer guide for healthy aging will be developed and distributed through consumer recommended sources to insure the findings reach the consumer level.