Author Archives: Chelsea Jang

Title: Providing community services for persons with disabilities during the COVID-19 pandemic: A scoping review

Objective: The aim of the study is to identify scientific literature that examines how community organisations and municipalities adapted services and resources provided to people with disabilities as a result of the COVID-19 pandemic. This will allow to an understanding of how organisations  pivoted  to  accommodate  challenges associated with the COVID- 19 pandemic and key strategies that can be utilised currently and in the future.

Method: A scoping review was conducted by searching different databases in January 2021. A multidisciplinary research team (e.g., rehabilitation, gerontology, engineering) of seven co-authors (researchers, postdoctoral fellow, graduate, and undergraduate students, and two librarians), with experience conducting literature reviews collaborated on this review. To be included, studies needed to  focus  on  community  and  public  services  provided  to  people  with  physical  or  cognitive  disabilities and services adapted to the COVID-19 pandemic. The study selection was done by identifying the relevant studies from the literature, screening the studies by applying the criteria to the titles and abstracts, then examining the full paper and finally extracting the data. Two  co-authors  independently  completed  these steps,  documented  the  reason  for  exclusion  and  then  compared  their  results to limit human error. Disagreements between the two co-authors were either resolved by consensus or by another  co-author. 

Results: 

• Fifteen studies have been included from the initial search strategy of 7651 studies.
• 53% of the studies were conducted in the US.
• Most services and resources (68%) involved some form of preventive healthcare (e.g., home care services) provided by some organizations (e.g., municipalities, governmental organizations, etc).
• Most of these organizations (60%) delivered services to older adults, 20% delivered services to individual with intellectual disability, respectively 7% targeted all persons with disability, 7% targeted people with Parkinson’s Disease and 7% targeted individual who had experienced a stroke.
• 53% of the studies reported that virtual services were described as valuable and resulted in improved outcomes (e.g., social skills, quality of life, cognitive score).
• However, this online transition process has required an increased workload from managers, as 13% of the studies reported.
• As 7% of the studies highlighted, this negatively impacted the quality of    communication between organizations and their members.
• As a matter of fact, all studies reported some form of barriers when pivoting those services, such as technology difficulties
• Concerns regarding access to technologies were reported. More isolated people or people living alone was also reported as a barrier to accessing services.
• On another hand facilitators were also reported in 80% of the studies, such as some form of organisational facilitator (e.g., flexibility, planning).
• Results highlight that the distribution and use of online services has increased since the COVID-19 pandemic.

Conclusion: The 15 papers published since the beginning of the Covid-19 pandemic, included in this scoping review, showed how community organizations and municipalities have pivoted to maintain their service offering to people with disability despite the social distancing measures. Online services delivery has increased during this period with valuable outcomes including the various barriers and facilitators that the organizations may have experienced.

What this paper adds to what is known about this topic:

• Fifteen studies (between January 2021 and August 2021) presented the adaptations that community organisations or municipalities had to make to provide services and resources to people with disabilities during the COVID-19 pandemic.
• Most studies concerned community organisations delivering resources and services for health prevention for older adults.

MAP-SWAN-SFU
Reflection – Dementia Data Collection
Author: Aislynn Sharrock

Introduction

This article describes my experience working as an undergraduate research assistant on the research project entitled “The Stakeholder’s Walkability/Wheelability Audit in Neighbourhoods (SWAN)”, led by Dr. Atiya Mahmood, at the Gerontology Department, Simon Fraser University. The SWAN project aims to empower people with various disabilities to advocate for inclusive communities and neighborhoods through using the SWAN tool. The SWAN tool facilitates participant-led evaluations of select streets and intersections by people with varying disabilities, including cognitive, mobility, hearing, and vision disabilities. The current version of the SWAN tool has been adapted for individuals with dementia or mild cognitive impairment (MCI) with the help of stakeholders (such as the Alzheimer Society of BC and Disability Foundation), advisory committee members, and people with lived experiences of dementia and MCI. Research data was collected with participants by completing a survey of the streets to explore barriers and facilitators to accessibility. This was followed by a brief interview to obtain information about the overall experiences of each participant.

Before starting recruitment for the dementia and MCI stream, we completed a pilot data collection session with a participant from the community to identify any potential issues that needed to be resolved. This participant agreed to have a follow-up interview with me (AS) to discuss their experience with our project, including working with the research assistants, as well as their opinions and reflections about anything that could be improved for future research projects involving participants with dementia and MCI. This participant had a previous relationship with the lead research assistant for the dementia group, Kishore Seetharaman, a graduate research assistant on the team with extensive experience working with people with cognitive disabilities. This facilitated the participant’s understanding of the research project. By conducting this follow-up interview, we hoped to uphold our commitment to a community-based participatory approach. This article includes reflections and feedback from our pilot participant as well as my personal reflections as an undergraduate research assistant, who was closely involved in data collections with the dementia population.

Personal Reflections

Even though I was somewhat nervous to do data collection in the community, particularly in neighbourhoods that were unfamiliar to me, I was thrilled to gain experience in this unique context. Our team tried to implement specific arrangements to better accommodate participants with dementia and MCI as we wanted to make their experience as smooth as possible throughout the entire process. For instance, phone or email reminders prior to the day of data collection were often addressed to the participant’s primary caretaker, since participants often required a caretaker to support them with daily tasks. In addition, we attempted to simplify data collection with our participants by omitting questions that the research assistants could answer beforehand, such as answering questions that asked if certain features of the built environment were present or not. Additionally, there were subtle differences in the way questions would be worded to this subgroup of participants, such as refraining from starting a question with, “Do you remember…?”, and instead saying something like, “At the previous segment we walked, we encountered these issues with the crosswalk; do you notice those issues here as well?”

Furthermore, we modified our protocol for participants with dementia and MCI by asking them to choose the location for data collection. This was different that our previous method of selecting pre-determined intersections in a municipality the participant was familiar with. The other method involved picking busy intersections that stakeholders and people with lived experiences report need assessing because there are several issues with the built environment for people with varying disabilities. Upon reflection, it may have been useful to help the participants with dementia and MCI choose one intersection that had more accessibility issues to make better use of all the questions in the SWAN tool.

Moreover, in retrospect, I recall that many of our participants in this stream were accompanied by their primary caretakers, often their partners. While our data collection protocol emphasized that the answers should be directly provided by the participants to capture their point of view, we noticed that the participants would sometimes look to their caregivers for additional information. Some caregivers readily filled in when they noticed the participant unsure of an answer to a question, while others tried to probe the participant to recall the information themselves. It was evident that caregivers were familiar with the participants’ routines and were able to provide our research team with insightful answers, especially during the brief interview we conducted with the participant after walking the segments. In many cases, our participant’s caregivers were also their lifelong partners and therefore, were able to recount the participant’s experiences. Therefore, having only the participant answer seemed to not always be applicable for the dementia and MCI group.

Participant Reflection

Following the completion of data collection with the dementia and MCI participants, I was interested in the participant’s experience with data collection. Through this, I scheduled a one-on-one interview with one of our participants. The participant supported the change to our protocol that allowed participants with dementia and MCI to choose the neighbourhood for data collection rather than meeting at a pre-determined intersection that was less familiar to them:

“You have no history there so you can’t say ‘Well this is what I’ve experienced with this’ or… ‘You really have to watch out for this.’ Whereas, if you’re at a strange block [unfamiliar intersection] you’re so focused on where you’re walking and noticing a trip hazard, that you’re not necessarily seeing what else is around you to comment on.”

Our approach to site selection also meant that some of the intersections chosen by the participants were without traffic lights, amenities, or pedestrian signaled crosswalks, as those were often familiar residential streets close to their homes. Additionally, the participant was surprised that the length of the assessment was not longer, and they felt that it may not fully address the accessibility issues they encounter in their community. The participant shared that they would have preferred to walk further in their neighbourhood to capture more data. Reflecting on this, we could have given our dementia participants the added option of walking to other intersections in their neighbourhood that would be of interest so that they could highlight additional issues that they would like to communicate to us. The participant believed that much of the process of data collection was already decided upon before meeting with them. Based on their feedback, it sounds like we would have benefitted in giving our participants more of a choice and welcoming their initiative when it came to the number of intersections that we completed with them.

Dr. Ben Mortenson was interviewed in the VCHRI newsletter about current and upcoming opportunities to make the outdoors more accessible to everyone, year-round.

https://www.vchri.ca/stories/2023/03/04/ask-expert-how-can-i-enjoy-cold-weather-activities-if-i-live-disability

By Chikkako Famadico, Holly Lemme, Thomas Jenkins, and Atiya Mahmood

For the full newsletter, click here.

Over 6.2 million Canadians over age 15 are living with one or more disability (e.g. physical, cognitive, sensory), including 1.5 million individuals who require mobility assistive devices for mobility and social participation in their communities (Statistics Canada, 2012; 2017). Canadians aged 65 years and older comprise the largest portion (approximately 38%) of Canadians living with at least one disability, and 24% of all Canadians using mobility assistive devices (Statistics Canada 2017). The prevalence, comorbidity, and severity of disability increases with age, with one in three older adults experiencing progressive disabilities; older adults may also experience cognitive and/or sensory disabilities along with mobility disabilities (Morris, 2019).

The “Towards Barrier-Free Communities: A Partnership for Improving Mobility, Access and Participation Among People with Disabilities (MAP)” project is a seven-year Social Sciences and Humanities Research Council (SSHRC)-funded project that works with community (e.g., people with lived experience) and civic partners (e.g., City of New Westminster) in developing, implementing, and assessing innovative interventions to improve the mobility and participation of people with disabilities. The goal of the SFU MAP project is to identify barriers in the built and social environments that inhibit equitable access to participation and mobility for older adults and people living with physical, cognitive, and sensory disabilities.

Two key research activities that are underway for the SFU MAP project include:
(1) the redevelopment of the Stakeholders Walkability/Wheelability Audit in Neighbourhoods (SWAN) tool for people who are blind or partially sighted, for people who are deaf or hard of hearing, and for people with early stages of dementia; and
(2) creation and implementation of an effective social media communications plan to engage with the public, partners, and stakeholders.

SWAN TOOL REDEVELOPMENT

The first priority of the SFU MAP project is the SWAN tool redevelopment. The SWAN tool is a user-led, environmental audit tool that allows individuals using mobility assistive devices to assess their surrounding urban environment for barriers to mobility and social participation. Completed audits using the SWAN tool can inform city designers and policymakers to improve accessibility and inclusivity of public spaces. Citizens, rather than researchers, use the tool to assess five main categories of their neighborhood: functionality, safety, appearance and maintenance, land use and support features, and social aspects.

The SFU MAP team is focusing on redeveloping the SWAN tool, adapting it for people living with dementia or sensory disabilities (e.g., low vision and hard of hearing). The new tools are being developed by way of a scoping review, input from persons with lived experience of sensory or cognitive disability, and combined with a literature search of existing population specific user-led environmental audit tools. Literature searches reveal a gap in relation to both population specific information (e.g., the experiences of hard-of-hearing individuals in urban environments) and user-led environmental audit tools. This highlights the need for the redeveloped versions of the SWAN tool, which will help us gain insight into the neighbourhood barriers and facilitators to out-of-home mobility and participation for people with cognitive and sensory disabilities.

Previous iterations of the SWAN tool used a pen-and-paper format, and the MAP research team is working with Jose Arias-Bustamante, from UBC, to develop a web-based desktop and mobile versions of the existing and new SWAN tool using Qualtrics for data collection.

COMMUNICATIONS PLAN

One of the critical parts of the SFU MAP knowledge mobilization (KM) strategy is to use social media communications to engage with primary stakeholders, the greater SFU academic network, the public, and community and municipal partners.

Social media platforms, or social networking services (SNS), are powerful tools that can instantly disseminate information and knowledge to a wide audience. There are three key behaviours unique to social media (knowledge seeking, knowledge-contributing, and social interactivity) that
allow the mobilization of knowledge to be readily available and easily accessible to the general public. (Ahmed et al., 2019). SNS communications are essential to the SFU MAP communications plan as they are invaluable tools to instantly connect and update stakeholders, partners, and the public about current project activities.

The SFU MAP communications plan will be targeting the following platforms to provide key research updates, raise awareness, and disseminate disability-related information and literature:(1) Facebook, (2) Instagram, (3) Twitter, and (4) LinkedIn. Each platform will be used to target different demographics based on current platform usage trends; Facebook will target a middle and older adult demographic, while Instagram will target a younger adult and adolescent demographic (Gambo & Özad, 2020). Further, Twitter and LinkedIn which are popular sites for professional advancement, networking, and self-presentation (Kim & Cha, 2017) will be used to target research professionals and academics.

Facebook and Instagram are the main platforms of focus for social interactivity with the public as they have the greatest networks and most active public users to date amongst the four SNS (Gambo & Özad, 2020). These two SNS are highly integrated and contain features that foster rich engagement, such as stories, highlights, and accessible external linking
(Ahmed et al., 2019; Thomas et al., 2020), which the communications team plans to capitalize on by posting on key disability-related dates and through sharing community engagement posts (e.g., trivia days to dispel disability-related misinformation and myths).

All SFU MAP public communications are following the W3C Web Content Accessibility Guidelines (WCAG) to ensure all social media communications are designed and disseminated with inclusivity and accessibility in mind. This includes specific SNS guidelines on descriptive image captions (i.e., best fonts and phrasing for low-vision readers), live video captions for
those hard of hearing, and inclusive visual design (i.e., colour contrasts of at least 4.5:1). MAP project stakeholders and community partners include people with lived experience of sensory disability, therefore, it is imperative that all SNS efforts strictly adhere to these guidelines to minimize community barriers and to ensure that all members of our SNS networks stay informed and have access to updated project information.

Atiya Mahmood, Eireann O’Dea, Catherine Bigonnesse, Delphine Labbe, Tanveer Mahal, Muhammad Qureshi & W. Ben Mortenson (2020) Stakeholders Walkability/Wheelability Audit in Neighbourhoods (SWAN): user-led audit and photographic documentation in Canada, Disability & Society, 35:6, 902-925, DOI: 10.1080/09687599.2019.1649127

Morris, Stuart P. and Statistics Canada. The Dynamics of Disability: Progressive, Recurrent or Fluctuating Limitations. Open WorldCat, http://epe.lac-bac.gc.ca/100/201/301/weekly_acquisitions_list-ef/2019/19-49/publications.gc.ca/collections/collection_2019/statcan/89-654-x2019002-eng.pdf.

Sarah Gambo, Bahire Ofe Özad, The demographics of computer-mediated communication: A review of social media demographic trends among social networking site giants, Computers in Human Behavior Reports, Volume 2, 2020, 100016, ISSN 2451-9588. DOI: https://doi.org/10.1016/j.chbr.2020.100016.

Statistics Canada (2012). Table 13-10-0345-01 Adults with disabilities DOI: https://doi.org/10.25318/1310034501-eng

Statistics Canada (2017). Canadian Survey on Disability.

Thomas, V. L., Chavez, M., Browne, E. N., & Minnis, A. M. (2020). Instagram as a tool for study engagement and community building among adolescents: A social media pilot study. Digital health, 6, 2055207620904548. https://doi.org/10.1177/2055207620904548

Yunis Ali Ahmed, Mohammad Nazir Ahmad, Norasnita Ahmad, Nor Hidayati Zakaria, Social media for knowledge sharing: A systematic literature review, Telematics and Informatics, Volume 37, 2019, Pages 72-112, ISSN 0736-5853, DOI: https://doi.org/10.1016/j.tele.2018.01.015.

June 13th, 2022

Aislynn Sharrock, Farinaz Riktehgaran, and Diana Juanita Mora

The aim of the Stakeholder’s Walkability/Wheelability Audit in Neighbourhoods (SWAN) project, a sub-project of the Mobility Access Participation (MAP) Project, is to connect with community members in order to assess the accessibility of streets through the lens of people living with different disabilities (e.g., sensory, cognitive). Using a community-engaged approach, defined as “a set of practices, values and objectives that emphasize active participation of the individuals and communities directly affected by research activities,” our team works to connect, collaborate, and build trust with members of the community through our various research activities. In line with this approach, our team came together to plan and host an interactive hybrid forum to co-identify areas for data collection with our community partners and stakeholders, as well as plan for their engagement in the next phases of our project.  Through this, we provided the opportunity for the community stakeholders to be more involved in the design and structure of our research project. Applying a community-engaged approach allows us to raise the voice of people with disabilities and build more accessible and responsive urban spaces. 

To make this event a success, planning and preparation started several months in advance! Bringing this event together involved the efforts of all team members and required input from several stakeholders such as our municipal partners. For example, our preparation efforts included a review of relevant accessibility and urban municipal policies, selecting potential areas for data collection using open-source data (e.g., pedestrian crashes, land use, transportation hubs) and producing and overlaying GIS data layers, conducting site visits to all our potential data collection sites, and lastly reviewing our plans with our municipal partners to incorporate their expert feedback. 

The event occurred on March 4th, 2022 which kicked off with a presentation by the former municipal partner from the City of Burnaby, Rebecca Mahaffey, and a community partner from Better Environmentally Sound Transportation, Janette McIntosh, who spoke to the past success brought by using the SWAN tool in the community. This allowed us to highlight the improvement seen in the community’s urban environment brought by the application of the SWAN tool. It also gave our attendees an overview of the partnership with the Gerontology Department. With a total of 40 attendees, our team members facilitated six hybrid breakout rooms/forums which focused on prioritizing areas for data collection by exploring the knowledge, opinions, and experiences of all attendees regarding the pre-identified intersections. This portion of the event adopted an interactive component which used visuals including recent photos of the intersections and Google Jamboards. The sessions revealed rich information about the challenges that people encounter in these areas and helped our team narrow down what intersections were feasible areas for data collection. We wrapped things up by asking about the barriers our municipal partners might face when trying to improve the accessibility of these areas, and how our attendees would like to be involved in the SWAN project moving forward. 

The results of our discussions in the breakout rooms showed that intersections prioritized throughout the Lower Mainland shared many concerns. For example, our stakeholders spoke of the insufficient crossing time present for pedestrians of all ages and abilities to cross safely at major crosswalks. Moreover, of the ambiguity between road space for vehicles, cyclists, and pedestrians, with a lack of distinct features to separate the shared road space. Additionally, a lack of necessary directional information needed for pedestrians with sensory disabilities. Lastly, the influences of a high density of traffic, pedestrian populations, and construction in creating high levels of noise, increase the difficulty of hearing auditory cues. These points were just a few that were highlighted by our stakeholders as having the most influence on the experience of people living with disabilities in accessing their communities.  

Subsequently, several challenges that come with improving the accessibility of these areas were discussed. Some of the main challenges include balancing the needs of vehicle users and of pedestrians. To make considerable accessibility changes to our intersections that promote walkability and wheelabity, there must be considerations for impacts on traffic flow, as well as driver mentality education, such as slowing down, giving the right-of-way, and being patient with pedestrians. Additionally, trying to find creative ways to work with developers and private property owners to have a consistent approach to making sidewalks and crossings safer and more accessible. Other considerations such as understanding how these changes may impact neighbouring businesses, working within annual City budgets, and logistical barriers to implementing changes all prove to be challenges when it comes to improving the accessibility of these areas.

Following the event, our team compiled what was learnt and sent out a summary of the event to all the attendees, including a short survey for feedback and future involvement in the project.  The “Stakeholder’s Engagement” event allowed us to strengthen connections with our partners as well as co-identify areas for data collection. Through this short survey, we have been able to get a closer look at what our attendees would like to be involved in the future. The responses showed that many of our stakeholders would like to get involved in ‘implementing interventions projects and programs’, and ‘participating in municipality focused groups’. With our continued strive to keep the community engaged, these responses to our event will allow us to better direct future conversations with our partners to build the necessary relationships. Following this event, our team came together and finalized the tool and training sessions for data collection. We have started the process of participant recruitment and data collection since mid-May. The SWAN research team intends to host more knowledge mobilization events in the future to raise awareness, disseminate the research findings, and actively involve the community in research on the accessibility of urban public spaces for people living with disabilities.  

MAP research team members from Simon Fraser University published an article in The Conversation about COVID-19 and Walkable Wheelable Neighborhoods. Read the story below:

https://theconversation.com/the-pandemic-highlights-the-importance-of-walkable-and-wheelable-neighbourhoods-165204

The MAP (Mobility, Access, and Participation) partnership welcomes you to Inclusive MAP, a podcast about its areas of interest, projects, goals, and the communities it collaborates with. Here you can find episodes exploring topics related to the MAP project team—the researchers, municipal and community partners, and community members—and our areas of focus—social accessibility, transportation, and navigation—available in English and French. Hosted by students and alumni Research Assistants from the University of British Columbia, Simon Fraser University, and Université Laval, Inclusive MAP invites you on a deep dive to get an up-close-and-personal look into the labs, our communities, what we’ve learned, and the personalities behind the research.  

Podcast coming soon!