Information Needs of People With Spinal Cord Injuries

Abstract

Background/Objective: To determine the information needs, level of Internet access, and current and preferred formats and sources of information of adults with spinal cord injuries (SCIs). Individuals with SCIs have a high lifetime risk for medical complications and other health conditions secondary to their injury. Many secondary conditions can be prevented or mitigated through appropriate self-care and/or selfmanagement. People with SCIs need timely, high-quality information about health and medical issues after discharge and throughout their lifetime to improve self-care and maximize quality of life. Methods: A survey was administered as part of the third time point of a longitudinal research study on individuals with SCI. Results: A total of 80.2% of the 277 respondents reported having Internet access. The most frequently selected format used currently and preferred by respondents for receiving SCI information was ''Web pages/ Internet.'' The top-ranked current and preferred source of SCI information was from a ''Physician: SCI Expert/ Rehabilitation Specialist.'' Respondents reported needing information on medical issues the most. Significantly higher percentages of individuals identified as ''white'' and with higher education levels had access to the Internet and ranked the selection of Web pages/Internet as their top choice. Conclusions: Results confirm that, although people with SCI prefer to receive SCI information from SCI experts, the Internet is a more accessible and more currently used source. Educational level and race predicted current and preferred use of the Internet for obtaining SCI information, suggesting that Internet distribution of SCI information will exclude subgroups.

How does knowledge about spinal cord injury-related complications develop in subjects with spinal cord injury? A descriptive analysis in 214 patients

“…Although the Internet was the fourth most important information source in this study, we believe that when information is easily accessible and is provided comprehensible, it may become a valuable additional SCI resource for patients after discharge. As medical issues related to SCI are the most important information topics on the Internet for individuals with SCI, 17 in this study younger subjects had higher knowledge scores; however, only few had very good scores. The teaching methods used in our hospital therefore were insufficient, as less than 50% of the SCI achieved good knowledge.…”

“…Although patients prefer to receive information from an SCI rehabilitation specialist, a recent study showed that the Internet is a more accessible and more currently used source for SCI patients. 17 In the current trend of shorter rehabilitation stays, because of insurance limitations and the difficulty of accessing SCI specialists, 18 patients and family members are required to absorb self-care information quickly while in the hospital and have to be proactive in finding health information once they are discharged. Although the Internet was the fourth most important information source in this study, we believe that when information is easily accessible and is provided comprehensible, it may become a valuable additional SCI resource for patients after discharge.…”

“…The differences in the number of patients with poor (0-8), average (9)(10)(11)(12), and good knowledge (13)(14)(15)(16)(17)(18)(19)(20) between the different age classifications (age at injury) were calculated using a w 2 or Fisher's exact test as appropriate.…”

Text input speed in persons with cervical spinal cord injury

“…14 Another study showed that people with SCI who have a higher level of education use Internet more. 16 It is possible that a high level of education is related to greater computer use and facilitates the use of Internet. The results of this study, however, suggest that these characteristics do not influence TIS.…”

Access to surgical upper extremity care for people with tetraplegia: an international perspective

“…Many respondents in this study identified lack of patient education as a common barrier (that is, patients were unaware of the treatment). Matter et al 12 surveyed SCI patients to determine their preferred route and source of information regarding health care. Patients preferred if the sources of information were a SCI expert/rehabilitation specialist, information via the Internet or in person.…”