A Critical Ethnographic Approach for Understanding How Environmental Factors Shape Experiences of Community Mobility for Older Adults Aging With and Into Vision Loss: A Protocol Paper

Study Background and Approach: Research By/With/For Older Adults Aging With/Into Vision Loss

In the 1990s, the phrase “nothing about us without us” came into use within disability activism (Charlton, 1998). It has been used by disability communities and their allies to support the idea that policy should not be created without the full and democratic participation of those affected by that policy. Reflecting this approach, eight older adults with age-related vision loss (ARVL), including BF, and academic researchers, including the Principal Investigator (CM), carried out the initial stages of a crtical participatory action research (CPAR) project in 2017 (McGrath et al., forthcoming). A collaborative approach to research that is focused on achieving justice-oriented social change, participatory action research (PAR) recognizes the strength of generating knowledge through inside-out collaborations and thus actively engages those traditionally conceptualized as the ‘researched’ in all aspects of research design (Fine & Torre, 2004). Building on this foundation, CPAR incorporates a critical focus that examines how power and social structures (e.g., racism and sexism) advantage some social groups, while marginalizing others (Sandwick et al., 2018). Our CPAR study specifically draws from critical gerontology and critical disability theory to examine how ageism and ableism shape the lives of, and possibilities for, older adults aging with, and into, vision loss (Estes et al., 2003; Ferguson & Nusbaum, 2012; Linton, 1998; Mallett & Runswick-Cole, 2014; Minkler & Holstein, 2008; Ray & Cole, 2009). Critical gerontology aims to question taken-for-granted assumptions about what it means to age well and “the seemingly un-reflexive ways in which gerontological knowledge is created” (Minkler & Holstein, 2008, p. 789). Critical disability theory re-conceptualizes disability by recognizing the social, cultural, political, and historical aspects of disability while at the same time acknowledging the impact of the body and associated physiological aspects of impairment. Although there is much research that looks at non-disabled older adults and young disabled communities, there is far less attention to the intersections of aging and disability (Aubrecht et al., 2021; Leah, 2023; McFarland & Taylor, 2020), specifically older age and vision loss. Informed by this critical body of scholarship on aging, disability, and the aging-disability nexus, our study aims to address power inequities, privilege the voices and experiences of older adults with ARVL, critically examine the social and political contexts that shape the lives of older adults aging with low vision, and ultimately facilitate action that enhances older adults’ lives in ways that are important to them.

During the initial stages of our CPAR study, older adult co-researchers developed three broad research priorities, including community mobility, technology, and community supports and servces. For each priority area, we collectively developed research questions and knowledge generation approaches, identified possible partnerships and participants, and imagined actions to support older adults with vision loss. For instance, for the first priority (community mobility), we developed the following two research questions: How do older adults with vision loss navigate their neighborhood? And what are the enabling and disabling features of a building, store, or outdoor space for an older adult with ARVL and how can those barriers be addressed to create more vision-friendly spaces? With respect to methods of knowledge generation, older adult co-researchers with vision loss proposed several methods of knowledge generation that were largely spatial (e.g., GPS tracking) or visual (e.g., photo-elicitation and activity mapping). Though sight-based, these methods of knowledge generation were strongly connected to proposed outputs focused on systems-level change, which connects to the ‘action’ part of CPAR.

In 2020, we received additional funding to address the first and most important priority identified by older adult community co-researchers: community mobility, which they defined broadly as encompassing driving, navigating alternate modes of transportation (e.g., bus, taxi, train), and walking in the neighbourhood, including accessing buildings, stores, and outdoor spaces. To address this priority, the original collective, including BF and CM, renewed and expanded to include other critical disability and aging scholars, including JM, EM, CH, and DLR, policy makers, including MS, and low vision services providers (e.g., CNIB). As a larger collective, we revisited and modified the original research questions and data collection methods and developed a new, overaching research question (how do environmental factors shape experiences of walkability and community mobility for older adults with vision loss?) and the following qualitative research methods, which constitute the central focus of the current protocol: (1) a spatially informed narrative interview; (2) a go-along interview with participant-directed photography and videography; and (3) a semi-structured, follow-up interview (detailed below).

Notably, these research design decisions took place within the context of the global COVID-19 pandemic and attendant public health measures (e.g., social distancing), which necessarily limited in-person activities between 2020 and 2022, including research activities (e.g., interviews). Unable to pursue data collection in the ways we had imagined during these years, we sought to participate in other research activities that responded to our overarching research question in the meantime, while complying with developing social distancing measures. For example, we conducted audits in four London, Ontario neighbourhoods in the summer of 2022. Based on Victoria Walks’ audit tool (Burtt, 2014), the audits were specific to older adults with ARVL and aimed to identify aspects of the built environment that make it difficult to navigate the community (see [report link/publications]). In 2023, when nearly all federal and provincial COVID-19 public health measures had been abandonned, we returned to our data collection efforts. In what follows, we describe our recruitment efforts and offer a detailed overview of our data collection methods.

Recruitment and Participants: Recruiting Disabled Older Adults in the “Post” Pandemic Era

To answer the overarching research question (how do environmental factors shape experiences of walkability and community mobility for older adults with vision loss?), the collective recruited participants from London, Ontario (a medium-sized, Canadian city) through convenience and snowball sampling. We recruited prospective participants with the support and cooperation of an age-friendly network, organizations that serve older adults and individuals with vision loss, a vision rehab network, and a health care institute for vision care. The research team did not initiate contact directly with potential participants; instead, they sent a recruitment poster to most community partners, asking them to circulate it through their listservs. Additionally, the study recruited participants through notices in print advertisements in publications, such as a local community newspaper, and through large-print recruitment posters which were placed in prominent locations at grocery stores, malls, libraries, optometry clinics, and in local community centers. The recruitment emails and publicly placed flyers outlined the objectives, risks, and benefits of the research, as well as provided the contact information of the researcher. Participants were also recruited through referrals, where recruited participants shared study details and contact information with others. All prospective participants were invited to contact the study team by email or phone if they wanted more information or wished to participate. JM then responded to study inquiries using either a telephone or email script to give further information and screen for inclusion based on the established criteria.

The research team recruited 20 older adults who met the study’s inclusion criteria. JM selected participants for this study based on their fit with several inclusion criteria, including: being 60 years of age or older; experiencing vision loss; self-reporting difficulty navigating their neighbourhood; being able to communicate in English; and residing in London, Ontario. Initially, we intended to exclusively recruit older adults experiencing age-related vision loss conditions, such as macular degeneration, glaucoma, and diabetic retinopathy (i.e., those aging into vision loss); however, we expanded our recruitment criteria to include individuals aging with vision conditions acquired earlier in life. We use “aging with” and “aging into” vision loss throughout to capture these two distinct, yet overlapping, experiences of older age and vision-related disability.

Data Collection: Adapting Methods for Blind and Low-Vision Participants

In working with older adults with low vision, it is vital that the research itself does not reproduce disabling conditions (e.g., inaccessible data collection methods). Since study participants were selected specifically for their embodied experiences of older age and vision loss, the research team had to anticipate and support the physical, digital, and social access needs of older adults with vision loss. To this end, we developed data collection methods with/by/for this community. In practice, this meant that study materials traditionally presented visually, such as the letter of information, had to be carefully adapted and presented in ways that were meaningful and accessible for Blind individuals and those with reduced vision. The team made every effort to make the research process accessible and inclusive (McGrath et al., 2025). To achieve this and support different levels of visual acuity, we printed documents in enlarged text, read documents aloud, and emailed the documents before the first session, allowing participants to use their own screen-reading or magnification software.

We collected data from study participants over a series of three sessions. The three sessions included a spatially informed narrative interview, a go-along interview in which the interviewer accompanied participants on outings in their neighbourhoods, and a semi-structured, follow-up interview. All interviews were conducted in person at participants’ homes and within their neighbourhoods. We scheduled interviews at a time and location of their choosing to ensure maximum convenience. The in-person format of these interviews was essential to provide participants with every opportunity to express and demonstrate the barriers they face in relation to navigating their community. In-person interviews for this study began in the spring of 2023, following the removal of provincial and federal public health measures (e.g., masking mandates) implemented during the emergency period of the COVID-19 pandemic. We remaining vigilant that this time, often referred to as the “post” pandemic era, has been criticized by many disability justice advocates, who argue that such changes made public spaces more inaccessible for disabled and ill communities, which may have amplified the barriers that our participants were negotiating (Amisi, 2024; McFarland et al., 2024). Despite the removal of mask mandates and other protective measures, the study adhered to a disability justice ethic of community care (Piepzna-Samarasinha, 2022). In alignment with this approach, the interviewer (JM) consistently wore a mask when interviewing, except when a participant indicated that masking created a barrier to communication (e.g., for individuals with hearing loss).

At the beginning of the first interview, JM presented and read the letter of information and consent form. This was essential to ensure that both the interviewer and participant could review the terms of the study and provide the participant with ample time to voice any questions, concerns, comments, or uncertainties regarding the study’s objectives and their role in it. During this time, JM also obtained informed consent from the participant to proceed with the interview. Importantly, the study offered participants the choice to either provide consent verbally or in writing. Offering a verbal consent option was particularly important to anticipate the needs of Blind and low-vision participants for whom “auditory ways of working and knowing” are vital (Bruce, 2021, p. 128). In such cases, the researcher explained the study, documented verbal consent had been given, and then signed as the person obtaining informed consent. Participants were also given the option to have a witness present to confirm that the participant was adequately informed before being asked to provide consent. Witnesses could be a family member or friend of the participant. Only the researcher and participant signed the consent form. Additionally, a signature guide (a tool designed to support Blind and low vision people to sign documents) was also offered to those participants who chose to give their consent in writing. After obtaining verbal or written consent, the interviewer explained and read both the video and photographic release forms to participants. The photographic and video release forms asked participants to consent to specific uses of their photos and/or videos, which were participant-directed and recorded during the second session (see below description) with the interviewer’s assistance. Finally, before the first interview began, the interviewer administered a demographic questionnaire (see Online Appendix A: Demographic Questionnaire). This information was used to describe relevant characteristics and background information of recruited participants, including the name and onset of their vision condition.

Interviews typically lasted between one to 2 hours, though a few were as brief as 30 minutes, while others extended up to 4 hours. The length of each interview was influenced by how much participants wanted to share, what their schedules looked like, the season we were travelling in, and any needs that required attention during or in between sessions (e.g., taking medication, walking around, and/or resting). Participants were given ample flexibility to set the pace and duration of their interviews, as well as the timing in between sessions. All interview sessions were scheduled specifically around the schedules and preferences of participants. If/when participants experienced discomfort, fatigue, illness, or sudden emotional distress, the researcher comforted them and offered them the option to pause, shorten, reschedule, or end the interview session. In addition to obtaining verbal and/or written consent from participants before the first interview, JM continued to seek and confirm consent verbally at each subsequent stage of data collection to ensure that participants still wished to remain in the study. All interview sessions were audio-recorded and then transcribed verbatim by a transcription service. Participants received a $20 gift card upon completing each of the three sessions. If a participant completed all three interviews, they received three gift cards, totally $60. If a participant ended an interview at any time for any reason, they still received the $20 gift card for that session.

Session One: Spatially Informed Narrative Interview

The first session participants took part in was the spatially informed narrative interview, where they were asked questions about the places they visit (or used to visit) in their neighbourhoods and how they navigate and experience these areas with vision loss. This session followed Wengraf’s (2001) Biographic-Narrative-Interpretive Method (BNIM). The interviewer (JM) began by asking each participant a single, overarching question: “Since noticing changes to your vision, can you tell me about the places you go, or would like to go, in your neighbourhood?” Participants were encouraged to narrate their stories in as little or many words as they wished. To ensure that participants felt their communication was valued and their contributions were important, the interviewer utilized all available resources (e.g., time) to create a safe environment where participants could select, organize, and sequence the events of their individual stories. Only after participants had finished telling their story did the interviewer ask follow-up questions for clarification and/or elaboration.

Once the interviewer had a general understanding of the participants’ story, the interviewer and participant moved on to a set of semi-structured questions, which informed the co-creation of a map. During this phase of the interview, the interviewer engaged the participant in spatial mapping, a data collection method in which the interviewer and participant co-created a map to visually represent the places the participant currently (at the time of interviewing) visits or used to visit in their neighbourhood. The creation of the map looked different for each participant depending on their vision. Some participants, generally those with central vision loss, preferred to draw their own map by titling their head sideways to use their remaining peripheral vision to see the map. Others described the placement of streets and meaningful places in detail and the interviewer created a map based on these instructions.

Before, during, and after the interview, the interviewer listened attentively and focused on key concepts, emotions, phrasing, words, and any accompanying body language expressed by the participant. When the participant finished a thought or concluded their part of the dialogue, the interviewer prompted them to provide more insight or further detail into specific topics by asking open-ended questions, such as: “Where are some of the places you like to visit in your neighbourhood?” and “What are some of the strategies you use when accessing these places?” (see Online Appendix B: Interview Guide for more details). During the co-creation of the map, and based on the participant’s responses, the interviewer recorded meaningful places, the methods and frequency of travel to and from these locations, and any barriers to participant’s walkability and community mobility.

Session Two: Go-Along Interview with Photography and Videography

The second session consisted of a go-along interview with participant-directed photography/videography, where the participant and interviewer went on a participant-led walk or drove to locations in the neighbourhood, and collectively recorded photographs and videos using a SIM-free iPhone and, in some cases, a GoPro device. These participant-selected destinations could either be places they used to visit, such as when they were younger and/or before experiencing vision loss, or locations they visit routinely as older adults with vision loss. Go-along interviews are a combination of interview and observation of the participant in the environment (Kusenbach, 2003). Older adult co-researchers in our collective emphasized the importance of including go-along interviews to allow first-hand observation of the challenges older adults with vision loss encounter when negotiating community mobility (e.g., navigating a store or building, crossing the street, etc.). While travelling alongside the participant, the interviewer observed the participant’s social practices and physical habits, and acquired more details by observing, asking further questions, and listening (Kusenbach, 2003). The questions were developed in real time by the interviewer and were dependent on what she observed of the participant’s decisions and actions in their neighbourhood. The interviewer focused on how environmental factors (e.g., a lack of vision-friendly infrastructure and confusion at crosswalks) affected the walkability of environment for the participant at the intersections of environmental features and participant attributes, such as visual impairment and use of mobility of devices.

Participants were instructed by the interviewer to identify environmental features along the chosen route that supported or restricted their community mobility and walkability and select features to photograph or record. All participants were given the choice to either wear a chest-mounted go-pro or direct the researcher to capture particular scenes. In two instances, participants chose to wear a chest-mounted video/audio recorder that captured their experiences in the environment from their point of view, rather than the interviewer’s perspective. In most cases, participants chose to direct the interviewer on what to record (e.g., fast-paced crosswalk times and inconsistent or non-existent audible signals). To ensure that participants had control over the creation of visual content, which was often visually inaccessible to them, the interviewer described what she was capturing. JM described what was in the shot, and if the participant moved into the frame, she always asked for their consent . In other words, participants were always given the choice of whether they or any part of their body would be included in any videos or photographs. In addition to respecting the privacy of participants when taking participant-directed photos and videos during the go-along, the interviewer also considered the privacy of those we encountered during our interviews in public spaces. Before taking any videos or photographs, the interviewer asked herself the following questions to ensure that the photos/videos adhered to the study’s ethical guidelines:

(1) Is the photo/video invading someone’s privacy? If yes, don’t take the photo/video.

Unlike photographs, which only record visual information, video recordings could capture other sensory knowledge, like auditory information (e.g., cars honking and voices). While video recordings hold the potential to be identifying (e.g., the voice of participants or others), they combine auditory and visual communication in ways that are more inclusive of participants’ changing embodiments and allowed participants with vision loss to have more direct control over the content, narrative, and interpretation of the visual data. Although image descriptions will accompany photographs in future presentations and/or publications, videos rather than photographs generally offer more access to Blind and low vision audiences.

Following the conclusion of each go-along interview, the interviewer took detailed field notes documenting the participant’s selected route, their social interactions, the notable affects of both the participant and researcher, and any in-situ challenges experienced by the participant (see Online Appendix C: Go-Along Field Notes).

Session Three: Follow-Up Interview

The third and last session consisted of a semi-structured interview. The questions for this interview were, in part, derived from information and observations gathered during the spatially informed narrative and go-along interviews. This approach aligns with the inductive nature of critical ethnographic research. The primary goal of the third session was to facilitate participant reflection on the information they had previously shared in the first two sessions. The interviewer followed Patton’s (2002) interview guide approach, asking participants questions based on a semi-structured outline of predetermined, in-depth questions, though not in a specific sequence. The order of questions was shaped by each participant’s response, ideas, and dialogues from the first two interviews. The interviewer adapted to each participant’s cues, crafting questions that probed the most relevant topics while respecting the participant’s preferred conversational flow. Examples of questions included, but were not limited to: “What makes a neighbourhood walkable to you?” and “If you were to imagine a vision-friendly neighbourhood, what does that look like?” (see Online Appendix B: Interview Guide for more information).