Information needs and information sources of individuals living with spinal cord injury

Abstract

Aims and objectives : Access to health information is important for the wellbeing of people living in the community after spinal cord injury (SCI). In order to design appropriate information interventions, it is critical first to understand the information sources typically used. The goal of this study therefore is to identify the information-seeking practices of this group. Sample and methods : A sample of 207 individuals living in the community following traumatic spinal cord injury were surveyed regarding their ongoing information needs and practices for seeking information. Results : The results reveal that respondents have unmet information needs, despite the fact that they typically access information through a variety of channels. SCI specialists are the most commonly used source, although they are viewed as relatively inaccessible. By contrast, the Internet (used by a relatively high proportion of respondents) is viewed as comparatively accessible, although there are some concerns about the quality of information found there. Conclusions : These survey results point to the need for an information source that is accessible and delivers high quality information. Although respondents use a variety of information sources, none meets this ideal profile. Information professionals should consider this gap in the design of information interventions.

Spinal Cord Essentials: the development of an individualized, handout-based patient and family education initiative for people with spinal cord injury

“…Among community dwellers with SCI and other disabilities, there is an increased interest in internet-based health information resources. 1,2,[29][30][31] Although online learning can be helpful during inpatient rehabilitation, it is especially important following community integration. Patients may not be motivated or ready to learn about different aspects of their injury until a dire need arises.…”

“…24 A Medline literature search (2000-2009) using the MeSH terms spinal cord injuries & patient education yielded five articles addressing the educational needs of patients with SCI. [1][2][3][4][5] The results of the above environmental scan were then used to generate a preliminary list of handouts for stakeholder feedback. Two 1.5 h focus groups were conducted and led by a facilitator and a member of the project team: (1) a consumer focus group consisting of persons with SCI, an attendant care coordinator and family members (n ¼ 7); and (2) a multi-disciplinary staff focus group (n ¼ 8).…”

“…Information needs are particularly important for personal care, maximizing independence and preventing and managing secondary health complications; [1][2][3][4][5] however, the psychological and physical effects of the injury can present challenges to learning readiness. [5][6][7] Although the volume of information that patients are faced with during inpatient rehabilitation can be overwhelming, 8 appropriate delivery of patient education is imperative to reduce and prevent secondary health complications.…”

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

“…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.…”