Participant recruitment process

This section provides an overview of my participant recruitment process including a description of inclusion and exclusion criteria for study participation. Both the older adult participants as well as the community organization representative participants will be discussed within the following section.

This critical ethnography sought to include the perspectives of both older adults with ARVL as well as community organization representatives. The older adults represented the primary participant group while the community organization representatives were intended to help me better understand the socio-political context in which the experiences of the older adult participants were embedded. Data generation did not occur concurrently as the community organization representatives were identified through the interviews with the older adult participants. As such, full data sets were collected with the first five older adult participants followed by four interviews with community organization

representatives. Once this preliminary data was collected and analyzed, data collection with the remaining five older adults participants were completed followed by the final three community organization representative interviews. In total, ten older adult participants and seven community organizations participated in the research study.

Older adults with low vision were purposively sampled for this critical

ethnography because of their rich experience living with vision loss (Thomas, 1993). Eight to ten older adult participants were originally estimated for this study. Throughout the process of data collection, however, it was iteratively decided to stop after data was collected with ten older adults with ARVL given the richness of the data collected at that point. This decision was further supported through multiple discussions with my supervisor as well as my

to be 65 years of age and older, have received a diagnosis of ARVL (including; age-related macular degeneration (AMD), glaucoma, and/or diabetic

retinopathy), self-identify as experiencing functional limitations due to ARVL, and be able to communicate effectively in English. Although this represented the original inclusion criteria, following the recruitment of the first five older adults, it was decided to increase the minimum age requirement to 75 years old in order to capture the experiences of an older cohort of seniors with ARVL given that each of the first five informants had been over this age. In addition, the inclusion criteria were modified to require each participant to have, at minimum, age- related macular degeneration. This modification was applied to ensure one level of homogeneity among the research participants experience of vision loss. Given that macular degeneration is the most common ARVL condition, this added inclusion criteria did not exclude any participants who inquired about participating in the study. Participants were excluded from the study if they experienced

significant cognitive challenges which impaired their ability to engage

meaningfully in the data collection process. I determined a participant’s cognitive capacity to engage in a conversational interview during the initial telephone contact that occurred as part of the recruitment process. No participants were excluded from the study based on this criterion. In addition, seniors who lived in an assisted living facility, where community access and occupational participation was restricted due to facility rules and policies, were to be excluded from the study. Three of the participants in the study lived in assisted care. Two of the participants did not experience any restrictions in terms of their community

engagement and so were not excluded from the study based on this criterion. For the one remaining participant, he expressed having experienced attempts by the institution to restrict his community engagement on account of his vision loss. As a result, the participant had to continually negotiate the terms of his community engagement. During those times, however, when this constant need for

negotiation caused the participant frustration, he would simply “run-away.”

Although the institution aimed to restrict the participant’s occupational

difficulty. Due to this continued engagement and persistence to engage in his community, the participant was not excluded from the study.

Older adult participants were recruited through a variety of means. My first recruitment strategy was to enlist the assistance of CNIB. As detailed in section 3.3.2, I had a relationship with CNIB prior to beginning data generation, which helped during the participant recruitment process. After receiving permission by The University of Western Ontario Research Ethics Board for Health Sciences Research Involving Human Subjects (HSREB) (see Appendix A) and internally from CNIB (see Appendix B), I identified a gatekeeper. This gatekeeper

circulated a two-page recruitment information sheet (see Appendix C) to frontline staff who then informed eligible older adult clients with ARVL. This initial

recruitment strategy resulted in five responses from two males and three females, all of whom were eligible and enrolled in the study (P1-P5). Data generation and analysis was completed with the first five research participants prior to further recruitment. This allowed for the purposeful sampling of the next group of older adults based on the emerging findings.

In the second wave of recruitment, I aimed to recruit only those older adults who were not currently receiving services from CNIB, were 75 years and older, and had, at a minimum, a diagnosis of age-related macular degeneration. In order to find older adults who met this more targeted recruitment criterion, I turned to local newspapers to run advertisements for the study (see Appendix D). The North End Community Breezes newsletter ran my advertisement in their May edition,

resulting in one response from a female participant who was enrolled in the study (P7). The cost was too prohibitive to run advertisements in the other community newspapers. Instead I participated in an interview with a reporter at the

Flamborough Review (see Appendix E) regarding my research which was

published on May 13, 2013 and wrote an information piece regarding ARVL for the Hamilton Mountain News (see Appendix F) which was published on June 27,

research participants, I am hopeful that it provided a greater sense of awareness regarding ARVL within my community.

At the same time as I was initiating recruitment through the local newspapers, I was further developing my relationship with the HCoA, as detailed in section 3.3.3. Part of my initial relationship with the HCoA was to familiarize myself with the programs offered through the Age-Friendly Hamilton sub-committee. At the time, the HCoA was running a series of "Let's Take the Bus" campaigns across the city in an effort to familiarize older adults with the public transportation system. I attended one of these sessions in Stoney Creek on March 28, 2013 where I met an attendee who was having considerable difficulty reading the bus schedule provided to her at the workshop. We began talking and she identified as having age-related macular degeneration. After informing her of my study, she agreed to participate (P6). The HCoA also introduced me to the Recreation

Coordinator of a senior’s subsidized apartment building in downtown Hamilton. On May 28, 2013, I was invited to speak about my study to the staff and

volunteers of six seniors apartment complexes from across the city. I provided a copy of the research study advertisement to each of the attendees who offered to circulate the information in their buildings. This recruitment strategy resulted in two responses from females both of whom were eligible and subsequently

enrolled in the study (P8 and P9). From this initial interaction with the Recreation Coordinator, I was also invited to complete a short presentation to the residents of the apartment complexes on June 14, 2013, to inform them about ARVL and where they can access services in the community. This presentation was attended by 13 residents and resulted in one response from a female resident who was eligible and enrolled in the study (P10). In total, nine of the older adults recruited for this study were recruited through CNIB and HCoA while one

additional participant was recruited through a newsletter advertisement in the

North End Community Breezes.

Although older adults with ARVL represented the primary participant group for this study, representatives from seven community organizations were also

recruited to better understand the socio-political context in which the experiences of the older adult participants were embedded. In total, nine respondents were recruited from seven organizations, given that one community organization requested the presence of three individuals at the semi-structured in-depth interview. The respondents included representatives from retail services, vision rehabilitation, low vision advocacy groups, housing services, transportation services, and seniors political/advocacy groups. Based on emerging findings from the older adult participants, these community organization representatives were targeted and recruited. To participate, the community organization

representatives needed to work for, or be a member of a community or political organization which established policy guidelines or provided services that influenced older adults with ARVL and had to be able to participate in an interview in English. All of the community organization representatives were recruited through personal email communication. Although seven community organizations agreed to participate in the research study, an additional five organizations either declined to participate or did not respond to email

communication. For those who declined participation, they noted a lack of time as the primary reason as well as feeling as though their contributions would be irrelevant to the study purpose.

Participant recruitment occurred over a period of nine months, beginning in November 2012 and ending in August 2013. A total of ten older adults with ARVL and seven community organizations participated in this research study. Although the newspaper advertisements were not a successful recruitment strategy, the relationships I was able to develop with CNIB and the HCoA allowed for a relatively seamless recruitment process.