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MAP team members recently published an article titled “Exploratory study on the adaptation of online services offered to people with disabilities, in the context of the COVID-19 pandemic” in the journal Disability and Rehabilitation: Adaptive Technology. The article explores the adaptation of healthcare services during the COVID pandemic from in-person to virtual, focusing on the implications for people with disabilities. Through their research, the team identified key facilitators and barriers that impacted the access to care for people with disabilities as well as potential areas of improvement that would support the ongoing accessibility of these community services. You can click on the links below to read the full article or learn more about the project!

The following infographics were prepared by the Active Transportation Policy Analysis project team. To learn more about this research project click HERE.

Infographic 1: The following document explains what public transportation is and some of the issues experienced by people with disabilities. 

Infographic 2: The document below is an introduction to public transportation policies and how it “works” in Canada and the US. 

Infographic 3: The following document presents the results of the analysis that compare public transportation policies in Chicago and Vancouver. 

Dr. Alfiya Battalova worked with member of municipal disability advisory committees to develop recommendations for effective engagement.

The  study  was  part   of   the  SSHRC-funded  Partnership  Grant  titled Towards Barrier-free Communities: A Partnership for Improving Mobility, Access, and Participation (MAP) Among People with Disabilities. The research study was based on the interviews with 33 individuals (26 committee members and 6 city staff) from 14 municipalities in British Columbia. Some accessibility advisory committees are comprised of a group of neighbouring municipalities.

This list of recommendations is based on the stories shared by people who are or used to be part of the accessibility advisory committees.

Recruitment. One of the ways to improve the diversity of the committees is to re-think a recruitment strategy and include the outreach to communities that tend to be under-represented on these advisory committees.

Connection with other committees across the province. Most of the accessibility advisory committees have a similar scope of work and mandate. Establishing a working group or a committee of committees that bring together representatives from the committees can become a community of practice that can be used as a space for learning from each other and drawing on each other’s experiences. Such community of practice can be beneficial for new community members who received a formal orientation but would like to learn more about the practical aspects on being on the committee.

Institutional memory. The turnover of staff who work with the committees often results in the need to re-build relationship between the staff and the committees and bridge a potential knowledge gap on the issues of accessibility. A better system of recording the information and sharing this information with new staff is recommended to improve the flow of work on specific issues and demonstrate a city’s commitment to accessibility.

Communications. One of the key functions of the committees is to provide feedback. However, it is often unclear how this feedback is used and if it is used at all. A more robust communication loop that would inform the committee members about how their feedback was used. This reporting back mechanism can be embedded into the project management flow. A preferred way of receiving such report needs to be discussed with each committee. Some might prefer a formal report, others might be satisfied with an email.

Committee structure. Irrespective of the cities’ commitment to accessibility, the proceedings of the meetings reflect the power differences between the city staff and the committee members.

Committees with members with disabilities chairing the meetings had more control over the meeting agendas and the overall meeting environment. They also shared more stories of success compared to the committees chaired by the city staff.

Honorarium. The meeting frequency varies across different committees. Committees that meet as often as once a month or even more depending on the subcommittee meeting schedule spend hours doing a committee work. This may include communicating with city staff, conducting research, attending community engagement events, attending city council meetings, and doing other committee related activities that add up to many hours per month. A careful consideration needs to be held about the introduction of honorarium for committee members.

You can download a PDF version or Word version of the document.

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 Farinaz Rikhtehgaran, Aislynn Sharrock, and Atiya Mahmood

For the full newsletter, click here.

There are barriers created by urban built environments for people living with disabilities that influence outdoor mobility and social participation (Mahmood et al., 2019; Labbé et al., 2020) The Towards Barrier-Free Communities: A Partnership to Improve Mobility, Access, and Participation (MAP) Among People with Disabilities¹, is a collaborative research project between UBC, SFU, and the ULaval that supports community organizations and municipalities to develop, evaluate, and implement evidence-based interventions to contribute to the development of barrier-free communities. The MAP project adopts a community-engaged approach, ensuring that the communities affected by these barriers are involved throughout the research process. The project ensures this by continually engaging with people with lived experiences (PWLE), municipalities, and stakeholders. A subproject surmised under the broader MAP partnership is the Stakeholder Walkability/Wheelability Audit in Neighbourhoods (SWAN) project. The SWAN project is led by Dr. Atiya Mahmood at SFU and is a scaling up of the dEMAND² project, which utilized the SWAN tool to assess the accessibility of urban environments through the perspective of people with mobility disabilities.

SWAN is a user-friendly observational tool that was originally developed by Dr. Mahmood, to capture the perspectives of older adults and people with mobility disabilities. It has five domains including functionality, safety, land use and supportive features, appearance and maintenance, and social aspects that each explore different dimensions of local neighbourhoods. With the aid of this tool, our team is currently collecting data with three populations – persons living with dementia, who are D/deaf or Hard of Hearing, and mobility device users in each of our six partner municipalities in Metro Vancouver.

Adopting a community-engaged approach, the SWAN project involves PWLE as co-researchers in designing, implementing, and evaluating the data collection tools and process. For example, during the tool adaptation process, PWLE guided what items would be included in the adapted SWAN tools, developed the data collection procedures, and supported the selection of the data collection sites. More specifically, the SWAN research team engaged stakeholders in the process of identifying locations for data collection through a collaborative forum that required several months of planning and preparation. Steps taken in preparation included the team pre-identifying problematic intersections in each municipality by overlaying GIS³ data layers (e.g., collision, urban centres, transportation hubs), conducting site observations, and consulting the municipalities about the sites.

Once all the preparation concluded, the research team hosted the hybrid forum in March 2022 to gain in-depth information about our selected sites. In total, 40 attendees including field experts, PWLE, and municipal representatives attended the event and engaged in a dynamic discussion in both smaller interactive rooms, and a larger group discussion. Discussions were supported by Google Jamboards that displayed bird’s-eye photos of each site, targeted questions and prompts, and space for attendee’s feedback. Each discussion was facilitated by a trained research team member and captured by notetakers who displayed summaries of the discussions on the Jamboards in real time.

Besides helping the research team to finalize the selected data collection sites, the forum provided detailed and nuanced information about the sites themselves. It was revealed that concerns at these sites crosscut through the municipalities; major concerns included insufficient crossing times at crosswalks and poorly demarcated road spaces for vehicles, cyclists, and pedestrians. Concerns also emerged related to specific disability groups – for instance, for people with hearing disabilities it was revealed that there was insufficient auditory cues available to help them safely navigate busy intersections, alongside poor directional information for those with cognitive, mobility, and sensory disabilities.

Beyond discussing what was working and not working at sites, the discussions also centred on the feasibility of improving the accessibility of these areas and challenges that might be encountered when doing so. When planning and proposing changes, municipalities must consider balancing the needs of vehicle users and pedestrians, ways to work with private owners and developers, and the impact on neighbouring businesses in combination with their annual budgets and internal capacity.

This participatory forum helped our team to connect with the community and engage many stakeholders in finalizing areas for data collection. Following the event, we shared a summary with all attendees, including a short survey for feedback and their choices for future project involvement. Presently, the team is wrapping up data collection and starting preliminary data analysis with the hopes of expanding the research work to adapt a new SWAN tool to capture the experiences of those who are partially sighted or blind. The team continues to work closely with municipalities in Metro Vancouver and contribute to the development of more accessible and barrier-free communities.

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¹ Project is funded for seven-years by the Social Sciences and Humanities Research Council
² “Enabling Mobility and Participation Among Those with Disability (dEMAND)” was a research project between SFU and UBC that used a community-based participatory research (CBPR) approach. This project aimed to understand the experiences of mobility devices users as they move about in their community as well as the barriers and facilitators that they encounter in their daily life (August 2017 GRC News)
³ Geographic Information System

To learn more about the project, contact us at:

Contact Information:
Project Lead: Atiya Mahmood (amahmood@sfu.ca)
MAPSFU@sfu.ca
778.782.7635
@InclusiveSWAN @InclusiveMAP

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.