Needs of Persons With Spinal Cord Injury (SCI)

Study Overview
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Brief Summary
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Persons with spinal cord injury (PwSCI) are at a greater risk for major health conditions and poorer health outcomes than persons without spinal cord injury (SCI). They often experience a great deal of health needs both on a physiological level as well as a psychosocial level. PwSCI frequently require supports and services to be able to live independently within the community. These services and supports are sometimes difficult to access within the community when the country is operating under regular capacity, in current times with the global COVID-19 pandemic, the challenges for obtaining and accessing supports and services will become much greater. The proposed project aims to identify the specific needs during this time of crisis and to provide referrals and resources to ameliorate those needs by surveying PwSCI in the St. Louis region. The project also hopes to determine if these persons experience isolation during shelter at home orders. PwSCI, who the investigators serve or have served in the past, will be contacted via phone or e-mail once a month for six months and asked to complete a questionnaire that will allow the investigators to track the participant's needs during the COVID-19 pandemic.

Detailed Description
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Acquiring a spinal cord injury (SCI) can be a traumatic event resulting in significant life changes. Both the physical and psychosocial consequences of spinal cord injury may negatively impact one's ability to accomplish activities of daily living, fully participate in occupations, and fulfill social roles. People with SCI are at a greater risk for major health conditions such as heart disease, high blood pressure, obesity, and diabetes than the population without disabilities. Approximately 30% of individuals with SCI are also at risk for developing negative mood states that include depression, anxiety, and anger. These negative mood states can also increase the risk of poor health outcomes, including increased medical complications, decreased independence in self-care, and decreased productivity. People with SCI also often require a great deal of supports and services to live independently within the community, such as a personal care attendant to assist with activities of daily living, access to accessible transportation, access to medical care, and access to repair services for their mobility device. Many of these supports and services are difficult to obtain in the community, medical institutions, and businesses when everything is operating in a regular capacity. With the changes in daily operations related to the COVID-19 pandemic there are many concerns about whether vulnerable populations like persons with SCI will be able to access the supports and services they need, this project will give the investigators information about what the needs are and whether they are being met.

Official Title
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Tracking Needs of Persons With a Spinal Cord Injury (SCI) During the COVID-19 Pandemic

Conditions
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Spinal Cord Injuries

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: diagnosis of an SCI; are 18 years or older; live in the community in the Greater St. Louis area, and have the ability to understand English. Exclusion Criteria: cognitive impairment that does not allow them to provide consent and/or ability to understand the questions posed in the survey

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| NIH Toolbox Instrumental Support Survey - change in instrumental support | Instrumental Support refers to the perception that people in one's social network are available to provide material or functional aid in completing daily tasks (such as making meals or providing transportation) if needed. This self-report measure for adults (ages 18 and above) is an 8-item calibrated scale.This study will use the measure to determine if people's instrumental support changes during a pandemic. | Baseline, 3 month and 6 month | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| UCLA (University of California - Los Angeles) 3-item Loneliness Scale - change in social isolation | A scale designed to measure one's subjective feelings of loneliness as well as feelings of social isolation. Participants rate each of the 3 items as hardly ever (score of 1), some of the time (score of 2), or often (score of 3). The scores for each individual question can be added together to give you a possible range of scores from 3 to 9. The higher the score the more lonely the person will be. This study will use the measure to determine if people feel socially isolated during a pandemic. | Baseline, 3 month and 6 month |