Advancing Health Promotion for People with Spinal Cord Injury
By Heather Taylor, Ph.D.,
Susan Robinson-Whelen, Ph.D.,
Rosemary B. Hughes, Ph.D., and
Margaret A. Nosek, Ph.D.
HEATHER TAYLOR, PH.D.
Director of the Spinal Cord Injury and Disability Research Center (SCIDR) at TIRR Memorial Hermann
Associate Professor in the Department of Pediatrics at McGovern Medical School at UTHealth
SUSAN ROBINSON-WHELEN, PH.D.
Senior Investigator, Center for Research on
Women with Disabilities, TIRR Memorial Hermann; Assistant Professor, Department of Physical Medicine and Rehabilitation, Baylor College of Medicine
MARGARET A. NOSEK, PH.D.
Founder and Executive Director of CROWD and Senior Scientist at TIRR Memorial Hermann
Professor of Physical Medicine and Rehabilitation at Baylor College of Medicine
A critical need exists to understand the relations between pain and depression and to identify factors that may moderate the effect of pain on depression and improve quality of life. Resilience has been gaining greater attention as a protective factor in sci as research is beginning to document its potential buffering effects.
Spinal cord injury (SCI) is a disabling condition that can have significant negative effects on a person’s physical and psychological health. In addition, individuals with SCI are at elevated risk for secondary health conditions such as pain, depression and obesity. Each of these conditions is associated with greater health complications, diminished independence, slower recovery and reduced quality of life.1-4 Unfortunately, individuals with SCI experience tremendous environmental and personal barriers to participating in community-based health-promotion programs. These barriers often involve lack of accessibility and accommodation. The Spinal Cord Injury and Disability Research Center (SCIDR) at TIRR Memorial Hermann is dedicated to conducting research designed to address the nature, scope, prevention and treatment of secondary conditions. The Center’s current portfolio of research programs includes a longitudinal study on pain, depression and resilience, and a health promotion intervention program designed to develop and pilot test a weight management program. Both studies address the physical and psychological health of men and women with SCI.
Longitudinal Study on Pain, Depression, and Resilience in SCI
Pain and depression often co-occur and have a compounding impact on one another, with research suggesting that pain may have a significant impact on rates of depression.5 Research shows that pain generally appears before depression.6 Thus, a critical need exists to understand the relations between pain and depression and to identify factors that may moderate the effect of pain on depression and improve quality of life. Resilience has been gaining greater attention as a protective factor in SCI as research is beginning to document its potential buffering effects. SCIDR is conducting a longitudinal study following equal numbers of men and women with SCI over the course of one year to evaluate these relations. The results will ultimately inform health policy and future interventions designed to improve the lives of individuals with SCI. This study, which includes participants with SCI from across the United States, involves administering questionnaires and conducting interviews with individuals by phone or computer, allowing them to participate from their homes. We find this outreach technique very useful.
Our SCI Model Systems (SCIMS), funded by NIDILRR, is conducting a study on a psychological health promotion intervention for women with SCI. This program, called ZEST, was described in detail in the previous issue of the TIRR Memorial Hermann Journal. ZEST tests the efficacy of a 10-week group intervention conducted in the virtual world of Second Life. This intervention also minimizes barriers to participation in health promotion programs by allowing women with SCI to fully participate in all aspects of the intervention from the comfort of their own homes.
Weight loss can be challenging for everyone; however, the challenges are much greater for people who have a mobility impairment like sci. People with disabilities face additional barriers related to cost, pain, disability-related fatigue, lack of access to recreational areas and exercise facilities and equipment, lack of transportation, and lack of knowledge about healthy and safe dietary behaviors in the context of their underlying health condition.
GoHealthySCI: A Weight Management Intervention for Men and Women with SCI
Individuals with SCI who are obese have been shown to have more frequent hospitalization, more severe pain, and less community mobility compared to those with normal weight.6 In fact, self-reported excess weight among men and women with SCI is linked with greater fatigue, pain, depression, overuse injuries and diminished life satisfaction.7 Relevant studies indicate that nearly half are trying to lose weight, with a higher percentage of individuals relying on dietary methods to lose weight compared to the general population.8,9 Weight loss can be challenging for everyone; however, the challenges are much greater for people who have a mobility impairment like SCI. People with and without disabilities face similar barriers to traditional weight loss efforts such as problems with dietary behavior, exercise, lack of interest or motivation, and lack of time. However, people with disabilities face additional barriers related to cost, pain, disability-related fatigue, lack of access to recreational areas and exercise facilities and equipment, lack of transportation, and lack of knowledge about healthy and safe dietary behaviors in the context of their underlying health condition. While these barriers have been specifically noted with regard to exercise and SCI,10 they can also limit opportunities for healthy eating. To address this critical health disparity, SCIDR researchers who were involved in the development of the "GoWoman" program, a weight management program for women with mobility impairments, proposed to modify it to address the unique needs of men and women with SCI. Thus, the “GoHealthySCI” weight management program is relevant and responsive to the unique weight management needs of people with SCI, is offered in WebEx allowing participation from home and is designed to be affordable, accessible and replicable by trained peer facilitators.
Developing and providing universally accessible and inclusive health promotion programs will support greater participation by people with SCI in research. This enhanced participation will offer additional opportunities for researchers and clinicians to receive and apply critical health-related information from a greater number of people with SCI. It will also strengthen our research findings by increasing our sample size. If found effective, our initiatives will result in improved health among people with SCI as well as offer health and health promotion models that can be utilized across the US.
Heather Taylor, Ph.D., is senior scientist and director for spinal cord injury and disability research at TIRR Memorial Hermann and associate professor at UTHealth. She is principal investigator on the NIDILRR-funded investigation evaluating pain, depression and resilience among men and women with SCI. Susan Robinson-Whelen, Ph.D., is a scientist at SCIDR and assistant professor at Baylor College of Medicine. She is principal investigator on the Craig H. Neilsen Foundation-funded intervention on weight management for men and women with SCI - “GoHealthySCI.” Rosemary Hughes, Ph.D., is senior research scientist at the University of Montana’s Rural Institute for Inclusive Communities and co-investigator on both projects. Margaret Nosek, Ph.D., is director for The Center for Research on Women with Disabilities, senior scientist with SCIDR at TIRR Memorial Hermann, and professor at Baylor College of Medicine. She and Lisa Wenzel, M.D., assistant professor at Baylor College of Medicine, are co-investigators on the “GoHealthySCI” intervention. Please contact Dr. Taylor at firstname.lastname@example.org with questions about the pain, depression and resilience study, and Dr. Robinson-Whelen at email@example.com with questions about the weight management study – “GoHealthySCI.”
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