Steps in the Research Process

As previously discussed, photovoice approaches to research can take on many forms, and can be a powerful means of learning more about individual and collective experiences of a social phenomenon. I chose to use a modified version of photovoice because the population that I am studying is not a unified group or community residing in the same geographic area, and because individuals joined the study at different points over several months. Thus, similar to what has been reported elsewhere (e.g., Brooks, Poudrier & Thomas-MacLean 2008), the young women began participating in interviews and the photovoice project at different times based on their convenience. Consequently, participants did not come together as a group to discuss their

photographs, as is typically the case in community-based photovoice projects (e.g., Carlson et al. 2006; Castleden et al. 2008). Additionally, the research design was flexible and allowed

participants to decide how they wished to proceed through the research process; in particular, participants could choose to participate in one or two interviews, depending on their preferences. The six steps involved in the research process were:

1) Recruitment and selection of participants (as described above).

2) Initial meeting with a participant at time/location convenient for them; project was explained and initial interview performed (if they chose to participate in two interviews) focusing on their lived experience of illness (see Interview Protocol and Guide, Appendix C); information provided regarding the photovoice project (described below).

3) Participant completed photographs for the photovoice project over the course of several weeks or months (as deemed necessary).

4) Second meeting with participant to perform interview focusing on the photographs that they took and their meanings, as well as follow-up questions on aspects of the illness experience (see Interview Protocol and Guide, Appendix C).

5) Participant reviewed transcripts for accuracy and gave consent for interview and photographic data to be included in the study.

6) Analysis of data (to be described below); findings were written up and will be disseminated in various forms (dissertation, conference presentations and posters, journal article, report to local support organizations, possible photograph exhibit, etc.).

Overall, I completed 18 interviews with the ten participants. Two chose to participate in one interview, while the remaining eight participants chose to complete two interviews, an initial in-depth interview and a second to discuss their photographs and allow for follow-up questions. Of the two participants who completed one interview, one was interviewed following her

completion of the photovoice project, while the other participant only participated in the in-depth interview and did not take any photographs because time constraints resulting from medical appointments and educational/employment commitments prevented her from doing so. The majority of interviews took place at the Qualitative Research Centre (QRC) at the University of

Saskatchewan. The QRC houses an interview room that has been designed to appear more like a living room than an institutional space. The other two interviews took place in participants’ living rooms. Interviews lasted between 45 and 120 minutes each, with the average length being approximately 75 minutes. Additionally, nine participants generated a total of 111 photographs, with the number per participant ranging from four to twenty two. One participant did not complete the photovoice project, but I performed an interview with her about her experience of illness.

The interviews involved both phenomenological and photovoice approaches. First of all, phenomenological interviews are “a means of exploring and gathering experiential material” about a social phenomenon (van Manen 1990). Accordingly, this style of interviewing seeks to generate stories about what it is like to have a certain experience from the perspective of those who have lived it, thereby sticking as close as possible to individuals’ lived experiences of social phenomena (Ibid). Thus, participants were asked to introduce themselves and then to describe how they learned about their illness. This question typically elicited a long response from the participant that discussed their life prior to diagnosis, the process of being diagnosed, and life since diagnosis. When necessary, I asked participants for specific examples, as well as clarification or elaboration. In some cases, I was required to ask very few other questions because participants talked at length, offering stories about their illness and its impact on their lives and relationships. A minority of participants needed prompting with specific questions that were aimed at generating stories about what it was like to be affected by their specific illness, and the effects that it had on their education/employment, relationships with family, friends, and partners, bodies, and expectations for the future (see Interview Protocol and Guide, Appendix C).

Following the completion of the first interview (or at the initial meeting in one case), participants were given the choice of borrowing a digital camera along with simple instructions or using their own camera to complete the photovoice component of the research. Only one participant chose to borrow the camera available, while the other participants preferred to use digital cameras that they owned. Participants were also given guidelines for completing the photovoice project that included: suggestions about how many photographs to take (10 to 12 each), broad topics that they may wish to focus on (diagnosis, family, everyday activities, social support, relationships, education, employment, etc.), and an explanation of the consent process and the photograph release form that subjects of the photographs were required to sign. At this time, I emphasized that participants could take the photovoice project in any direction that they wished, and take as many or as few photographs as they deemed necessary.

Following the taking of photographs, participants met with me to complete a second interview. The second interview (completed by eight of the participants) focused primarily on the photographs that the participants had taken for the photovoice project. Participants’ photographs were transferred to my laptop computer via email or USB memory stick/DVD for us to view together. Participants began the interview by selecting a photograph and talking about the subject, why they had taken it, and what the meaning behind it was. According to Clark-Ibanez (2007), using participant-generated photographs to elicit discussion helps to lessen the

awkwardness of interviews because it provides a focus and gives participants something familiar to talk about. Thus, participants were able to lead the interview, deciding what to talk about and when to continue to the next photograph. In some cases, I questioned the participants further in order to elicit more detail regarding photographs. For example, in response to Nancy’s

she had been taking a specific medication. This question elicited a lengthy response about how she must make decisions about this medication on a daily basis, its financial cost, and its implications for her everyday life, which I elaborate on in Chapter Five.

After the photographs had been viewed and explained, participants had the opportunity to talk about anything that had not previously been discussed. I also used this time to ask for

elaboration and clarification on the stories shared by participants in the initial interview, or to ask about specific issues if they had not been already broached (e.g., social support, relationship with body in light of illness, education/work, etc). Often, the photovoice project had led participants to reflect on their experiences, which resulted in greater insight being gained in the second interview. For the participant who participated in one longer interview, the first half of the interview was phenomenological in style, exploring her lived experiences of illness, while the second part focused on the photographs that she had taken and the meanings that they held.