Contenido del derecho de propiedad comunal indígena y tribal

Discourses take many forms and are influenced by macroenvironmental and cultural factors (Laliberte Rudman, 2011; Silcock, 2013). Discourses influence what people think and subsequently influence social behavior, social expectations, and acquired identities (Silcock, 2013; Swartz, 1997). Discourse elicitation was used in two ways in this study. First, it was used during interviews with my consultants to encourage discussion of the impact of broader social beliefs and assumptions on their lives and their social participation. Second, it was used in three public venues to gain an understanding of local perceptions of mental illness from the general public and to provide a context for understanding my consultants’ experiences related to social participation. This study used discourse analysis to explore how the consultants’ perceptions about their own experiences meshed with the local community views through which they participate.

For discourse elicitation with consultants, each person was asked to identify one piece of discourse that reflected their experience of mental illness and participation in social life (see Appendix F). These discourses were discussed during the second interview. Oliver

is a poet and chose to share several of his poems that spoke to his experience. One such poem, Inquisitor’s Hands, was written immediately after his first inpatient hospitalization. Carly also chose written text to express herself; she chose a quote that spoke to her experience after her traumatic brain injury and brief psychotic episode. She posted the quote on her Facebook page to serve as a source of motivation and a reminder to her of her recovery journey. Willow and BB chose pictures. Willow chose a colored picture of

wavelengths and used an editing program to write her thoughts over the picture. BB chose a picture of a man sitting alone at a coffee shop, which was a common location for our

observations. Leo decided to draw a penciled drawing that represented his specific experience of mental illness; he drew a scene wherein he was introducing himself to someone else while his past experiences and labels related to mental illness (e.g., crazy, psychotic, trespassing, being arrested) followed closely behind him.

For discourse elicitation with the broader social environment, each piece of discourse, a total of 7 pieces including the 2 photos I contributed, were enlarged and displayed on easels in 2 public areas. A brief written description of the project and instructions were placed on a small table near the display. Passerbys were prompted to write their thoughts and feelings on a post-it note and stick it to the piece of discourse to which it referred. The first public venue was located near a local university. The large open space was picked to engage a high volume of people as they walked to restaurants or class. Given the proximity to a university, the population of people who participated were likely more affluent and highly educated, though there were several participants who did not appear associated with the university (i.e., panhandlers, court attendees). However, the makeup of the population was not important because the objective of discourse elicitation was to understand the social beliefs operating in local environments where my consultants were participating; this included a diverse population of people interacting at this venue. In a

those people only stopped to look at the display and read the instructions, but moved on without contributing to the display. Only seven people wrote their thoughts on post-it notes and posted it to the display. The second display occurred at a downtown area of a nearby community. The venue was chosen because it was central to many restaurants and businesses. Both sites were within communities regularly frequented by 4 out of the 5 consultants. There was very limited engagement with the local public during the second display. This was likely due to poor weather as it was cold, windy, and rainy and it was difficult to keep the display upright. Eight people passed by, and only one couple briefly glanced at the display but then continued walking. Due to limited participation in the 2nd display, an online display was added to the study. The IRB at UNC-Chapel Hill approved this modification in the study design. The discourse was posted to a social networking and news website called Reddit. A discussion thread was created in three subreddit online communities representing the geographical areas of my consultants. Information,

instructions for online users, and the discourse were posted to the subreddits for 24 hours and then the posts were removed from the site. There were 38 total views and 3 comments during this 24 hour period. All submissions were anonymous. Descriptions of the observed behavior and action surrounding the photos were noted in fieldnotes and transcribed. All post-it notes and comments were transcribed and coded as well.

3.4.3.1 Benefits to Discourse Elicitation

Discourse elicitation was an effective method to uncover underlying social beliefs for this particular topic and population. The selected discourses (two photographs chosen by me and the piece of discourse brought by my consultant) facilitated a discussion between my consultants and I about our individual views about how mental illness impacts social participation and interaction. Rather than discussing this in broader terms as in the first interview, the use of photos focused the conversation and distinctly highlighted consultants’ feelings about how mental illness actually impacts their lives. I found that my perceptions of

the impact of mental illness were often more negative than that of my consultants. For example, one of the pictures I selected was a man standing still in the middle of a crowd of people (see Appendix E) swirling around him. To me it represented feelings of isolation and separation despite the multitude of people actually around him. For Oliver, it did not

represent this at all. He said, “He looks like a normal dude to me to be honest…People on their day to day…No one’s obligated to go and talk to you or anything.” This photograph helped me to understand Oliver’s experience as someone who has had a psychotic episode as compared to my own assumptions as someone who has not. It also elicited thoughts about his expectations for social interaction in that he anticipated that people may not talk to one another as they go about their daily routine and this may be a social norm for him. Willow’s interpretation of the photos were also slightly different from my own:

Um, I think both of them make me, well that one is like feeling trapped and that one is feeling like you are not on the same wavelength as other people, to me. And I think that, that...feeling trapped, I don't necessarily feel trapped. Um, I'm kind of an expert of getting out of social situations (laugh). But.. I think feeling like you are not on the same wavelength as everyone else is like definitely something that's very present for me.

The use of photos helped her to articulate her experience and compare and contrast her experience with others. Although she shared some feelings about being socially anxious and feeling ‘awkward’ in certain social environments during the first interview, this notion of being on different wavelengths and the deepness to which she was able to talk about her experiences through the use of discourse was starkly different.

Integrating discourse elicitation into interviews was especially useful for some consultants. BB was not very vocal during his interviews. Interviews did not appear to be a format with which he was particularly comfortable. Despite the open-ended questions, he often gave vague, short answers and seemed hesitant to delve into his story or discuss his mental illness openly. However, the use of the photos to elicit deeper ideas and thoughts from him was an effective method to structure his participation. During the second interview,

in response to the two pictures, he expanded upon how he felt his mental illness had impacted his participation:

I feel like people are trying to put me into a box but I can still, I still try to get out of it a lot..It seems like there are more rules in my life now. Like I have to go to the doctor every two weeks. They have to watch me. I have to be on meds. My parents don’t want me to drink as much. And like my doctors don’t want me to drink as much. I have to go to outpatient rehab and…that was, my drinking was a way for me to get out into like the world and do stuff…But a lot of that just isn’t around anymore, so it’s, a lot of time I’m at home doing my own thing. And not really engaged with people outside in the world. And sometimes, some of my friends I don’t talk to anymore. I don’t know why. But a lot of my friends are either far away or just non-existent anymore.

Thus, one of the major benefits to use of discourse elicitation was that it elicited more complex, profound responses from individuals, such as BB, who were not as vocal or not as comfortable sharing their thoughts and perspectives.

In this study, discourse elicitation was a beneficial method for enabling trust and eliciting tacit perceptions and comprehensive knowledge about my consultants experience related to mental illness and their social participation. As mentioned above, it was difficult for consultants to incorporate me, the researcher, into their daily lives. In studying

marginalized populations, rapport and trust are critical issues to facilitate comfort and sharing of knowledge and experiences (McKenzie, Tulsky, Long, Chesney, & Moss, 1999). Discourse elicitation can be very useful with marginalized, vulnerable, and hidden

populations. Focusing on the discourse offered a different way for consultants to talk about their experiences in a less threatening way that facilitated discussion and sharing of

knowledge. This method also had the added benefit of allowing me to elucidate my biases and perceptions regarding my consultants’ lived experiences. This impacted my data analysis and encouraged me to think about findings and concepts in broader ways (i.e., not based as much in my clinical experiences) and encouraged humility to acknowledge

3.4.3.2 Limitations to Discourse Elicitation

During interviews with my consultants, there were no major drawbacks to discourse elicitation. BB and Willow required a little extra time to send their discourses, but with extra time and further instruction regarding the method’s purpose, they found discourses that represented their experience of mental illness and participation. To garner broader social perceptions from the general public, use of discourse elicitation required more practical considerations of how to effectively deploy this approach. I encountered a significant challenge in finding an appropriate public location for the display. Several venues in the local community would not allow displays from others not affiliated with their organization. Others required a registration fee and permits. It was difficult to anticipate the locations and time periods that would elicit the most participation from the community. I envisioned people hanging around the display, examining the photos, writing deep thoughts and phrases on the post-it notes, and having conversations amongst themselves. The aim was to compare their thoughts and comments with my consultants’ comments to see how they aligned. I wanted to assess whether the perspectives of people without a diagnosis reflected the perceptions of those who have had a diagnosis. I also wanted to understand the invisible local social perceptions that impacted the social participation for people with mental illnesses. In actuality, this approach did not prove to be as effective as I had imagined. At the first display, people stopped to look at the photos but few wrote comments about the photos. The comments were often very short and it was difficult to fully understand what they meant. In addition, the effort and time involved for participants to review the discourse was a factor that I had not fully considered. At both venues, people were often on their lunch break, heading to class, or out with friends and did not seem to want to stop with their group. The poor level of participation in the public displays yielded little data and did not meet the objectives I had envisioned.

After the second public display, I concluded that online postings were likely a more effective approach for discourse elicitation with the broader social arena. While the third online display also generated limited participation, the responses were more substantial. For example, in response to the picture of the man in the glass jar, four responses were given from different people at the first display: 1) Trapped and feels like everyone is looking at them and scrutinizing them; 2) Forced to patiently accept limitations; 3) Aging vs. becoming more dependable on others; and 4) In life we all need help on becoming self-reliant. These were the longest responses offered during the full 2-hour display with 7 pieces of discourse present. In comparison, during the 24 hour online display, one person provided significantly more complex comments to the 7 artifacts:

1: is that the sun? These pictures seem esoteric in a way I don't get. But I get the impression it's far away and on a different scale of size. 2: oh no they are certainly trying to be social if they're in a cafe. This was me earlier today... 3: this looks like how it feels to be self conscious or otherwise have an attention disconnect between your inside and everything outside. 4: are they seeing themselves from an outside perspective? The glass seems like an unnecessary layer of wall or protection or something. 5: So far they all seem to me about social participation. 5 is the first to suggest mental illness, and even that's only because I see the effects of behavioral consequences and people's reactions. This one makes me sad. It seems like they want to be present and friendly and have their own identity but keep getting pulled back from it and generally not accepted. The labels are from outsiders; they don't get to share their own name let alone self identify as anything other than 'crazy'. 6 and 7 are unclear and I'm not as interested in words. I really like the pictures though, thank them and you for sharing.

These comments were detailed enough to compare different perspectives and understand the person’s own perceptions and beliefs. It is likely that using online postings for longer time periods would elicit more responses with greater depth.

There are many benefits to the use of online formats for data collection: reduced cost, ease of data entry, flexibility of format options, increased participant self-disclosure, assurances of anonymity, and a greater ability to access different populations (Granello & Wheaton, 2004). In addition, online postings offer greater temporal flexibility than most other modes of data collection. A participant can fill out the survey at any time of the day in

whatever location they prefer. Through online postings of different discourses, consultants could engage others in an open dialogue about their experiences of mental illness with anonymity. While there are potential risks to the consultant’s self-image (e.g., negative comments about mental illness that reiterate the societal stigma they already feel), this could also serve as an avenue for the consultant to take action and promote a shift in broader social perceptions and beliefs about individuals with mental illness. Two of my consultants reported that the opportunity to share their story and impact change was a significant motivator for their participation in this study. For Oliver, the idea that his thoughts and words could impact someone else was very important to him. When asked about how he felt about his participation in the study, he replied, “I mean I would be very grateful if anything about my life that I share with you wound up helping our acquisition of knowledge about people with psychiatric disorders for lack of a better term.” Leo shared a similar sentiment; he stated, “This study gives me something to look forward to and a chance to tell my story.” Willow also shared with her college advisor that participation in this study was one of the best things she did during her college experience, though she did not expand upon why her involvement served such an important role during her college experience. Providing these opportunities to share their story, impact broader social change, and reflect on their own experiences in a safe space were significant benefits of the chosen research methods for this study. The interviews and discourse display provided opportunities for self-

expression, reflection via conversation, and sharing of personal experiences that may not have been garnered from other research methods. Discourse elicitation and the use of online blogging could be a way to expand these benefits in future studies on first episode psychosis.