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Participation, Subjective Well-Being, Health, and SCI


Participation, Subjective Well-Being, Health, and Spinal Cord Injury:
A 40-Year Longitudinal Study

The purpose of this 40-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 was 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 current study is 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 are 3 primary activities:

  1. Finalization of instrumentation, based on consumer panel recommendations and pilot testing   --View Instrument--
  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).

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 ensure the findings reach the consumer level.

Funding Agency: National Institutes on Disability and Rehabilitation Research ( H133G110157 (2011-2014)

The contents of this website were developed under various grants from the Department of Education. However, those contents do not necessarily represent the policy of the Department of Education, and you should not assume endorsement by the Federal Government.