COVID-19 Resources for Individuals with Spinal Cord Injury
Navigating the Pandemic: Exploring Perspectives of Individuals with Spinal Cord Injury on COVID-19 Resources
Pegah Derakhshan¹,²,³,⁴ William C. Miller²,³,⁴, Ethan Simpson²,³,⁴, Tyrone Scales¹,²,⁴, Farrukh A. Chishtie¹,²,⁴, Christopher B. McBride⁵, Jaimie Borisoff³,⁴,⁶, Julia Schmidt²,⁴, W. Ben Mortenson²,³,⁴
- Graduate Program in Rehabilitation Sciences, UBC, Vancouver, BC, CA
- Rehabilitation Research Program, Centre for Aging SMART, Vancouver Coastal Health, Vancouver, BC, CA
- International Collaboration on Repair Discoveries (ICORD), Vancouver, BC, CA
- Department of Occupational Science & Therapy, UBC, Vancouver, BC, CA
- Spinal Cord Injury British Columbia, Vancouver, BC, CA
- British Columbia Institute of Technology (BCIT), Burnaby, CA
OPEN ACCESS
PUBLISHED: 30 October 2024
CITATION: Derakhshan, P., et al., 2024. Navigating the Pandemic: Exploring Perspectives of Individuals with Spinal Cord Injury on COVID-19 Resources. Medical Research Archives, [online] 12(10). https://doi.org/10.18103/mra.v12i10.5973
COPYRIGHT:© 2024 European Society of Medicine. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
DOI https://doi.org/10.18103/mra.v12i10.5973
ISSN 2375-1924
ABSTRACT
The COVID-19 pandemic severely impacted vulnerable populations, such as individuals with spinal cord injury (SCI). Concerns within this group have escalated regarding access to essential services, including caregiver support, equipment maintenance, and medical care during the pandemic. In response, multiple COVID-19 online resources tailored for individuals with SCI were developed and provided. This study aimed to investigate the perspectives of individuals with SCI (n = 12) on available COVID-19 online resources and to examine the perceived usability, clarity, and applicability of the resources.
In this qualitative descriptive study, we used an online survey and semi-structured interviews to collect data. Survey results indicated that 70% of participants found the resources useful, 65% found them easy to navigate, and 60% were likely to use the information provided, with specific feedback revealing generally positive responses for prevention infographics and text-based mental health resources, mixed feedback for mental health and physical activity videos, and varied responses for caregiver resources.
Based on the data from qualitative interviews, three main themes emerged, namely “Quality of information”, “Presentation” and “Delivery of Resources”. Findings highlight the need for more specific, realistic, and actionable information tailored to the SCI community, emphasizing the importance of detailed, visually appealing, and regularly updated resources to effectively support individuals with SCI during health crises.
Introduction
The COVID-19 pandemic is a global public health threat¹,⁴, with over 770 million cases and nearly 7 million deaths recorded to date. The social, health, and economic impacts of mitigation efforts have profoundly altered human relations⁵. By implementing measures such as physical distancing and disrupting social interactions and activities⁶, resulted in unintended sequelae and precipitated urgent needs related to mental and physical health, education, employment, travel, and domestic abuse⁷,⁸. Moreover, the pandemic has disproportionately affected individuals with disabilities, exacerbating existing health disparities and highlighting the need for targeted interventions.
People with disabilities have faced significant challenges during the COVID-19 pandemic, including increased risk of infection and severe outcomes, difficulties in accessing healthcare, and exacerbation of pre-existing health conditions⁹,¹¹. Addressing these ongoing challenges requires a comprehensive and inclusive approach to pandemic response and recovery efforts, which also addresses specific issues faced by disabled communities. Those profoundly impacted by COVID-19 measures include individuals with spinal cord injury (SCI). They face exacerbated negative impacts on physical and mental health¹²,¹⁴, and concerns among this group have escalated regarding access to essential services, including caregiver support, equipment maintenance, and medical care during the pandemic¹⁵,¹⁶.
In response, various organizations have developed COVID-19 resources tailored for individuals with SCI¹⁷,¹⁸. However, given the rapid deployment of these resources, their alignment with the actual experiences, coping strategies, and needs of the SCI community remains uncertain¹⁹,²². In our previous study we systematically catalogued, evaluated, and synthesized COVID-19 web-based resources for individuals with SCI. Our search identified 71 SCI organizations and 10,538 potential resources, with 112 resources meeting the inclusion criteria. These resources were categorized into ten domains: prevention, caregivers, exercise, mental health, stories, telehealth, specific organs/systems, evidence reports, SCI network COVID-19 response, and a COVID-19 communication rights toolkit. The result of this scoping review provided information on distribution, context, and quality of resources using validated quantitative evaluation checklists. The quality of the resources was generally low for text, high for infographics, and moderate for videos. However, to understand the usability of these resources, it is essential to consider the perspectives of individuals with SCI²³,²⁴.
Therefore, the following phase of our research aimed to investigate the perspectives of individuals with SCI on the COVID-19 online resources. Understanding the specific impacts of COVID-19 on disabled communities is critical for developing targeted interventions that can mitigate negative effects and improve overall well-being. By advancing research in this area, we aim to identify gaps in current support systems and propose solutions that can enhance the resilience of individuals with disabilities, such as SCI, during health crises. Not only is this research relevant to the current pandemic, but it also provides valuable insights for managing future public health emergencies and other related disasters.
Using the information from our scoping review, we developed a package of the COVID-19 online resources for individuals with SCI to review, so that we could better understand their perspectives, and evaluate the usability of the available resources.
Methods
DESIGN:
In this qualitative description study²⁵,²⁶, semi-structured interviews were conducted from July 2023 to December 2023. The study received approval from the University of British Columbia Behavioural Research Ethics Board and is reported according to the consolidated criteria for reporting qualitative research (COREQ) guidelines.
For this study, we selected the top 10 resources in each category (text, video, and infographic) based on the scores from the aforementioned scoping review. The chosen resources were then presented to stakeholders (JB and CMB) from spinal cord injury – British Columbia (SCI-BC) and British Columbia Institute of Technology (BCIT), with the intention of crafting a comprehensive package containing diverse and practical content for individuals with SCI from the available resources. The package comprised an infographic and video on prevention of COVID-19, a text and video on mental health, a video on physical activity, and a web text focusing on caregivers. The specifics of the resources included in the package are outlined in Table 1.
Table 1: List of SCI resources offered in toolkit package
| Category | Sample Size (n) | Percentage (%) |
|---|---|---|
| Age | 18-29 years | 7 |
| 30-39 years | 12 | |
| 40-49 years | 33 | |
| 50-59 years | 42 | |
| 60-75 years | 8 | |
| Gender | Male | 58 |
| Female | 42 | |
| Residence | Urban | 67 |
| Suburban | 8 | |
| Rural | 25 | |
| Pre-existing Conditions | One or more conditions | 58 |
| Diabetes | 14 | |
| Hypertension | 20 | |
| Respiratory issues | 12 |
The resource package, accompanied by a Qualtrics survey which included socio-demographic information and disability characteristics, was distributed to participants. They were asked to provide feedback on the navigation, understandability, usefulness, and likelihood of utilizing each resource by rating them from 1 (Strongly Disagree) to 5 (Strongly Agree). Participants were recruited from lists of previous research participants who had agreed to be contacted about future studies, as well as through advertisements on various platforms, such as the International Collaboration on Repair Discoveries (ICORD) website.
The inclusion criteria for this study were as follows: Canadian adults aged 19 and older, individuals with SCI, those who can speak English and understand spoken and written English, and those with access to technology and the internet.
As part of the participants’ recruitment and enrollment process, informed consent was obtained from all participants. This ensured that they were fully aware of the study’s purpose, procedures, and their rights, including the confidentiality of their responses and their right to withdraw from the study at any time. Participants then received a link to the resources, and they could access and view the resources on a phone, tablet, or a laptop/computer based on their preference. Subsequently, participants were invited to a Zoom interview session to delve deeper into their perceptions of the presented COVID-19 resource package.
DATA COLLECTION:
Data collection occurred via semi-structured interviews, developed in collaboration with a community partner, conducted online through Zoom by an MSc student enrolled in Rehabilitation Sciences.
(author: TS). The questions were designed to gain a deep understanding of their experiences with the navigation, understandability, usefulness, and likelihood of utilizing each resource. The interviews typically ranged from 20 – 40 minutes in duration. Interviews were recorded and transcribed verbatim. Transcripts were then identified using code numbers.
ANALYSIS:
Data collection and analysis proceeded iteratively. Subsequently, all identifying information was redacted from the transcripts before review by other team members. Employing inductive thematic analysis following Braun and Clarke’s framework²⁵, we aimed to grasp the perceived perspectives of individuals with SCI regarding available resources. Initially, the first author coded a subset of interview transcripts. Two researchers independently coded this subset, subsequently meeting to compare codes, fostering reflexivity and rigor. Following this, codes were clustered into thematic groups, and dominant themes were identified. To enhance credibility and trustworthiness, four members of the research team (PD, BCM, BM, and FAC) convened over multiple sessions to discuss the evolving analysis, exploring new themes and sub-themes. To ensure the trustworthiness of our findings, we incorporated several strategies. First, the team engaged in prolonged engagement with the data, discussing and refining themes over multiple sessions. The research team’s diverse expertise facilitated a comprehensive exploration of the data from multiple angles, enhancing the depth of the analysis. Reflexivity was a critical component of our research design. Researchers participated in debriefing sessions after interviews to discuss immediate reflections and potential influences on the data. Regular team meetings were held where researchers openly discussed their reflections and potential biases. These sessions promoted collective reflexivity, allowing team members to challenge each other’s perspectives and interpretations. This collaborative approach helped in achieving a more balanced and nuanced analysis. These strategies contributed to a transparent and reflexive approach, ensuring that the analysis faithfully represented the perspectives of individuals with SCI.
Results
The survey collected responses from a total of 12 participants. Table 2 summarizes the demographics of these participants.
All participants completed the survey, achieving a 100% completion rate. Participants provided feedback on various COVID-19 related resources, indicating their usefulness, ease of navigation, and likelihood of using the information.
Based on the data from qualitative interviews, three main themes were identified: Quality of Information, Presentation of Resources, and Delivery of Resources. Quality of Information was defined by the participants’ need for actionable, realistic, and in-depth details, particularly focusing on physical activity and problem-solving. Presentation of Resources was analyzed based on the clarity, layout, and accessibility, with participants emphasizing the importance of readability and well-organized content. Delivery of Resources highlighted the importance of accessibility across different formats and timely distribution, with a focus on ensuring broad reach and inclusivity. This thematic analysis captures both directionality and the deeper needs expressed by participants. The survey results, including specific feedback on various resources, are integrated within these themes to provide a comprehensive understanding of the strengths and areas for improvement in SCI resources for COVID-19.
Table 2: Demographics Table for Study Participants
Category | Subcategory | Percentage (%) | Count (n)
Age | Mean age (SD) | – | 55.7 (11.7) years
| 18–29 years | 0 | 0
| 30–39 years | 17 | 2
| 40–49 years | 17 | 2
| 50–59 years | 33 | 4
| 60–75 years | 33 | 4
Gender | Male | 58 | 7
| Female | 42 | 5
Residence | Urban | 67 | 8
| Suburban | 25 | 3
| Rural | 8 | 1
Pre-existing Conditions | One or more conditions | 58 | 7
| Diabetes | 14 | 2
| Hypertension | 20 | 3
| Respiratory issues | 12 | 1
Quality of Information
This theme encompasses participants’ need for more specific, realistic, and actionable information regarding SCI resources for COVID-19. Feedback highlighted the importance of detailed and accurate content that addresses their unique concerns and circumstances, emphasizing the necessity for continuous updates and comprehensive coverage. Participants provided diverse insights into the type and quality of information they found useful or lacking in the SCI resources related to COVID-19.
Participants expressed a desire for more in-depth and detailed information tailored to their unique needs as individuals with SCI. For instance, one participant noted, “The information provided is not detailed enough; we need more hardcore information specific to our condition.” Another participant added, “More detailed information specific to SCI is necessary.”
While some appreciated the conciseness of the resources, there was a call for balancing brevity with depth. One participant mentioned, “The resources are concise, but sometimes they lack depth and realism.” A separate participant noted the need for depth, stating, “Concise information is good, but it should not compromise on depth.”
There was a strong preference for resources that not only highlight problems but also provide practical, solution-oriented approaches. A participant remarked, “I appreciate when the resources offer actionable solutions along with the problems.” Highlighting ease of implementation as critical, another participant recommended, “Actionable solutions are crucial in these resources.”
The importance of physical activity during COVID-19 was highlighted, with participants seeking more emphasis on this aspect. “There needs to be more focus on the importance of physical activity during COVID,” one participant stated. This was also shared by another participant, stating that, “Highlighting physical activity during COVID is very important.”
Participants stressed the need for continuously updated and comprehensive information. One participant noted, “Resources need to be constantly updated to reflect the latest information and guidelines.” Emphasizing the importance of latest updates, another participant stated, “Regular updates to the information are essential.”
Survey results indicated that 70% of participants found the resources useful, 65% found them easy to
Conflicts of Interest Statement
The authors declare that they have no conflicts of interest related to this work.
Funding Statement
This study was funded by a Seed Grant from the International Collaboration of Repair Discoveries.
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