A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
A spinal cord injury (SCI) is damage anywhere along the spinal cord from an accident or other trauma. As a result of advances in medical care, rehabilitation, and assistive technology, more people with SCI are living longer. People with SCI may experience health-related challenges that may become worse or more complex as they get older. They may benefit from using a variety of services and supports to optimize their quality of life as they age. In a recent NIDILRR-funded study, researchers interviewed older adults with SCI and family members caring for older adults with SCI. The researchers wanted to find out what health-related changes the individuals with SCI experienced as they got older, what health services they used, and what supports they received and challenges they encountered in their lives.
Researchers at the Regional Spinal Cord Injury Center of the Delaware Valley interviewed 41 people with SCI and 8 family caregivers. The participants with SCI were at least 60 years old and had experienced their SCI for at least 5 years before the study. All of the participants with SCI had received care through the Center. During the interviews, the participants with SCI were asked about their health and how it had changed in the last 5 years. They were also asked about medical services and therapies that they used, and about their participation in major life activities. The caregivers were asked about the services or assistive tools that they used to perform their caregiving, and about their family member’s health during the last 5 years.
The researchers found that the responses of the participants with SCI and the caregivers fell into four general themes during the interviews:
The authors noted that policy reforms may reduce challenges encountered by older adults with SCI and their caregivers. For example, the authors noted that Medicare will currently pay for either in-home health services or outpatient therapies, but not both. Some of the participants in this study described having a need for both types of services to address different health issues. Policymakers may wish to consider more flexible, customizable health plans to address the individual needs of people aging with SCI. In addition, the authors noted that improving health literacy may help empower people aging with SCI to optimize their own health and give caregivers the information they need to provide adequate support and care. Rehabilitation providers may wish to provide ongoing health education services for individuals aging with SCI, and their caregivers, as they continue to experience changes in their health.
The Model Systems Knowledge Translation Center (MSKTC) offers a range of information resources about SCI, from factsheets and videos to summaries of scientific research. http://www.msktc.org/sci
The Spaulding New England SCI Center’s website includes the New England SCI Toolkit, designed for people with SCI and their healthcare providers to collaborate for better health outcomes. It covers standards for care and includes referral to providers and support resources in the New England area and beyond http://snerscic.org/resources/new-england-sci-toolkit-nescit/
The Rehabilitation Research and Training Center on Healthy Aging with Physical Disabilities conducted long-term surveys with older adults living with SCI, multiple sclerosis, and other disabilities. The data gathered was used to create a substantial collection of articles and factsheets around how to manage age-related issues alongside a physical disability. http://agerrtc.washington.edu/
Kern, S.B. (2019) Understanding the changing health care needs of individuals aging with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 25(1), 62-73. This article is available from the NARIC collection under Accession Number J80539.