Exploring how People with Spinal Cord Injuries Seek Support on Social Media

Quantitative study. The study aimed to explore Family Caregivers of Individuals with Spinal Cord Injury (FC-SCI) social media use patterns, most frequently used platforms, importance of social media for receiving and providing support, and type of social support (i.e., social companionship, emotional support, informational support) that FC-SCI receive or provide online. FC-SCI participants from Canada and USA. FC-SCI responded to measures regarding the social media platforms they use to access support, the importance of each platform, and the types of online social support they access through social media. Sample consisted of 115 FC-SCI. Most caregivers were a partner or spouse of the individual with SCI (n = 110) and female (n = 111). Majority of FC-SCI spent 1-3 h daily on social media (n = 74), and Facebook was used predominantly (n = 108), followed by Instagram (n = 92), and YouTube (n = 66). For receiving or providing support, Facebook was ranked most important (60%), followed by Instagram (26%) and YouTube (17%). The mean differences and standard deviation were found for the types of social support: emotional support (25.93 ± 7.60), social companionship (23.85 ± 7.46), and informational support (27.24 ± 7.50). Using social media for informational support is desired by FC-SCI as it is easily accessible, and time-efficient. The prevalent use of social media for support by FC-SCI demonstrates that social media is a valued platform for support. The support benefits for the mental and physical health of caregivers should be further evaluated.

Social media has developed exponentially over the last decade as a means for individuals and patients to connect to others and has provided a unique opportunity for physicians to provide broader information to the general public to attempt to positively modify health behavior. The purpose of this study was to assess the patient's perception of spinal cord injury (SCI) on social media. Instagram and Twitter social media platforms were analyzed to determine posts written by patients with SCI. The initial search for Instagram posts tagged with "#spinalcordinjury" yielded over 270,000 posts in April 2021. Posts pertaining to the patient's experience were retrospectively collected from January 2020 to April 2021. Twitter posts that included "#spinalcordinjury," "@spinalcordinjury," and "spinal cord injury" were retrospectively collected in April 2021. One hundred seventeen tweets were found that were directly from a patient with SCI. Themes associated with patients' experiences living with SCI were coded. The most common theme on Instagram was spreading positivity and on Twitter was the appearance of the wheelchair (75.8% and 37.3%, respectively). Other common themes on Instagram were the appearance of a wheelchair (71.8%), recovery or rehabilitation (29.9%), and life satisfaction (29.0%). Prevalent themes on Twitter included spreading positivity (23.2%) and recovery or rehabilitation (21.3%). The prevalence of themes of positivity and awareness may indicate the utilization of social media as a support mechanism for patients living with SCI. Identification of prevalent themes is important for the holistic treatment of SCI survivors.

: Background. The COVID-19 pandemic has imposed a paradigm shift in the pedagogical methodology for a resilient medical educational university system. The epidemiological context has imposed a large-scale closure of universities and disturbed traditional methods of teaching and learning (the direct face-to-face patient-student clinical interactions). Social networks such as the YouTube platform seemed to be a complementary source for medical information, providing a modern, viable e-health strategy for physiotherapy students. Only nine studies addressed rehabilitation in various pathologies, but none of them analyzed the quality of videos focusing on neuraxial rehabilitation. Methods. During the 2021–2022 academic year, six undergraduate license theses focused on the frequently encountered pathology in the Neuromuscular Rehabilitation Clinic of TEHBA: rehabilitation after spinal cord injury, stroke, Parkinson`s disease, and disk hernia. The studies started with the hypothesis that the materials posted on the YouTube platform might have variable-quality content depending on the provider who posted the film. The students were given guidance to search for and select the videos and instructions to use the DISCERN and global quality (GQS) scales and to classify the technical and scientific features of each item using descriptive analysis. These qualitative Likert scales assess several video parameters, including the audio-visual flow, the content's medical knowledge value, and its applicability to physiotherapy students. Given the use of public-domain videos available to the general public and posted in the mass media on the YouTube platform, the approval of the Ethical Council was not necessary. Results. Each movie's scientific content was assessed according to its significance, relevance, and clarity. Videos posted to the YouTube platform by healthcare professionals (including experienced physiotherapists), healthcare institutions, and academic health organizations achieved the highest DISCERN and GQS scores compared to other video sources. Videos posted by vloggers (independent authors or patients) received the lowest reliability and quality scores. Discussion. The article presents a timely and relevant study on integrating digital tools in medical education. Although many YouTube videos with kinesiotherapy and rehabilitation content have offered valuable information, students and younger residents should be aware that the social platform sometimes fails to provide high-quality content. YouTube administrators, vloggers, and publishers should use validity scales (such as DISCERN and GQS) as standard guides for quality self-control and promote reliable, evidence-based medical information. Conclusions. A judicious use of e-health education and social media platforms during the COVID-19 pandemic represented complementary sources of reliable medical information for physiotherapy students.

History, Current Practice, and the Future of Wound Care for Occupational and Physical Therapists.

BackgroundDepression is a common psychological condition after spinal cord injury. There are increased incidences of self-harm, suicidal behavior, and lower quality of life among people with spinal cord injury and depression. However, self-management of depressive symptoms in the community is less explored.ObjectiveThis study aimed to examine the prevalence, severity, and self-management of depressive mood in community-dwelling people with spinal cord injury.MethodsA descriptive study was conducted in 2019 among 115 people with spinal cord injury discharged from three health centers and living in the 13 districts of Bagmati Province. Participants were selected using stratified random sampling. Questionnaires were related to demographics, health and environment, depressive mood, and self-management. Descriptive statistics and quantitative content analysis were used to analyze the data.ResultsNinety-seven (84.3%) people with spinal cord injury had a depressive mood. Of these, 60.8% had moderate to severe depressive moods. They mainly used the internet and social media, shared feelings with family members, and practiced Hindu religious activities for depressive mood management because of the physical barriers to accessing a healthcare facility and easiness to use of non-pharmacological methods. Nearly half of participants who used sharing of feelings felt their depressive mood disappeared when they often used the method.ConclusionDepressive mood following initial hospitalization is highly prevalent among people with spinal cord injury in Nepal, most of whom live in rural settings. Therefore, nurses and other health professionals should provide psychoeducation for this population and their family members to better address mental health problems. Facilitating pathways for those in rural areas to engage in social activities and timely treatment access may improve depressive mood. Nurses and other rehabilitation professionals can use social media to assess depressive moods and deliver management approaches in the community.

Social media is broadening opportunities to engage in discussions about biomedical advances such as stem cell research. However, little is known about how information pertaining to stem cells is disseminated on platforms such as Twitter. To fill this gap, we conducted a content analysis of tweets containing (i) a stem cell keyword, and (ii) a keyword related to either spinal cord injury (SCI) or Parkinson disease (PD). We found that the discussion about stem cells and SCI or PD revolves around different aspects of the research process. We also found that the tone of most tweets about stem cells is either positive or neutral. The findings contribute new knowledge about Twitter as a connecting platform for many voices and as a key tool for the dissemination of information about stem cells and disorders of the central nervous system.

Citation (2023), "Prelims", Ward, P.R. and Foley, K. (Ed.) The Emerald Handbook of the Sociology of Emotions for a Post-Pandemic World, Emerald Publishing Limited, Bingley, pp. i-xvii. https://doi.org/10.1108/978-1-80382-323-220231015

This study sought to identify common mental health-related concerns of people living with spinal cord injury (SCI) and define strategies that can mitigate adverse circumstances. We organized three focus groups of persons living with SCI (N = 5, 6, and 5, respectively) and recruited participants using a research registry and social media. We conducted focus groups via Webex, which lasted 60-90 min. We used discussion guides that an advisory committee, composed of persons with SCI and health care providers, reviewed and revised. A professional service transcribed Webex audio recordings. We used NVivo Pro 12 to code the transcripts for thematic analysis. Sixteen persons with SCI (six men, 10 women; M = 48 years) residing in Midwestern and Atlantic coast states participated. Eighty-one percent sustained SCI 2 or more years earlier, 69% sustained paraplegia, and 69% had incomplete injuries. Participants described feelings of anger/frustration, social isolation/loneliness, and depression as mental health challenges, in addition to developing identity as a person with a disability and timing of supportive mental health services such as SCI peer mentors. Persons with SCI identified the need for improved access to community resources as well as mental health services. The findings can guide the development of practice recommendations and resources for rehabilitation professionals and mental health providers. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Objectives: This study aimed to assess the perception of pregnant Saudi women about the use of epidural analgesia in labor and explore the association between their socioeconomic class and the previous education or experience of epidural analgesia as an option for pain control during labor. Subject and Methods: Th is cross-section study was conducted among women attending the obstetric clinic at the King Abdulaziz University Hospital, Jeddah, Saudi Arabia. A convenient sampling technique was used to collect the participants by a trained team of data collectors using a valid questionnaire. Data was processed and analyzed using the IBM® SPSS® Amos.Results: A total of 409 women visiting the maternity clinic were enrolled in this study. The mean socioeconomic class score was (62.7 ± 17.83). Women who had previous health education on epidural analgesia had a significantly higher score (65.84 ± 15.8, p < 0.001) than those who had not. Friends and relatives and social media were rated as the main sources of education according to the participants’ opinion. Low back pains after receiving epidural analgesia (55%) and spinal cord injury (25%) were the common perceived complications. The multivariate logistics regression showed significant association between previous exposure to epidural analgesia for labor pain control and previous education on epidural analgesia. The model showed that women's socioeconomic class score correlated significantly (p < 0.001) with women's higher odds of having a previous epidural analgesia education.Conclusion: Although, the perception of pregnant women regarding epidural analgesia was generally positive, education by the anesthetist and obstetrician during the antenatal visit is recommended.

Objectives: To identify the information networks of caregivers and individuals with spinal cord injury (SCI) and how the health information is accessed and used. Methods: For this qualitative study, participants from the United States were recruited through hospital listservs, websites, social media, and word of mouth to participate in a phone interview. Fourteen individuals living with a traumatic SCI and 18 caregivers of individuals living with a traumatic SCI were interviewed using a semi-structured interview guide. The interviews were transcribed verbatim, coded using NVivo, and analyzed using qualitative thematic methods. Results: Participants reported that medical resources such as SCI specialists were considered the most reliable sources, but due to accessibility barriers the Internet was used the most. The Internet and social resources, such as online and in-person support groups, provided beneficial content information and emotional support, but they posed credibility concerns and left participants feeling unsure of reliability. Information gaps such as lack of education on basic care practices during the transition from acute to chronic care were identified by the participants. Conclusion: Because SCI is an overwhelming experience, it is difficult for patients to retain information in the initial acute care phase, leading to gaps in knowledge about long-term care. Patients are concerned about the reliability of online sources of information; therefore, there is a need for new methods of SCI information dissemination. Potentially, using primary care providers as conduits for information distribution might improve access to reliable long-term SCI information for caregivers and patients.

Study designAnonymous online surveyObjectivesTo investigate the priorities, needs and willingness to adopt nerve stimulation devices for managing neurogenic bladder and bowel function in people with spinal cord injury (SCI) living in Australia.SettingOnline survey of people living with SCI in Australia.MethodsThis anonymous online survey used Qualtrics and was advertised via standard communication channels, such as advocacy groups representing the SCI community in Australia, social media, attending SCI sporting events and by word-of-mouth.ResultsResponses from 62 individuals (32% female, 68% male) were included. Bladder emptying through urethra without catheter was the highest priority for bladder function. Reducing time required for bowel routines and constipation were the top priorities regarding bowel function. The highest concern for internal/implanted devices was the 4% chance of device surgical removal, while wearing wires under the clothes was the main concern for external devices. 53% of respondents were willing to trial an implanted nerve stimulation device, while 70% would trial an external device to improve and gain independence in bladder and bowel function.ConclusionThe findings of this study highlighted the potential role in which nerve stimulation can have in addressing bladder and bowel dysfunction in people with SCI, and have also identified that there was a need for Australian physiotherapists to evaluate their role in bladder and bowel dysfunction. Results from this study can help guide further research in nerve stimulation devices for bladder and bowel dysfunction in people with SCI.Sponsorshipn/a

Development of Interview and Online Self-report Versions of Motor and Sensory Components of a Neurological Exam for Classifying Spinal Cord Injury (One-SCI).

Survey study OBJECTIVES: To understand the priorities and expectations of individuals with disabilities caused by spinal cord injuries(SCI) who require long-term inpatient rehabilitation at a rehabilitation hospital. Başakşehir Çam and Sakura City Hospital, İstanbul, Türkiye METHODS: This cross-sectional clinical study included individuals over the age of 18 with SCI who had previously been hospitalized in a rehabilitation hospital. The 18-question survey, titled "What should a rehabilitation hospital be like according to persons with spinal cord injuries?" was administered to individuals hospitalized in the inpatient service of Çam Sakura City Hospital. It was also disseminated to people with SCI through social media. The participants' demographic data was recorded. The survey was completed by 120 participants, comprising 70 males and 50 females. The mean age was 37.47 ± 11.63 years. The time since the SCI was less than one year for 20 individuals and more than one year for 100 individuals. The results showed that robotic rehabilitation and psychological support were the most requested rehabilitation domains, while interest in sexual rehabilitation was less than that in other rehabilitation domains. Furthermore, in the correlation analysis, elderly participants indicated that there should be more specialized services and outpatient clinics exclusive to the SCI. The study revealed a striking trend - participants expressed a strong desire for SCI-specific rehabilitation units and robotic rehabilitation. Additionally, the significance and necessity of sexual rehabilitation should be conveyed to people with SCI.

Spinal cord injury models: neurophysiology.

Polysialic Acid Glycomimetic Promotes Functional Recovery and Plasticity After Spinal Cord Injury in Mice