Semántica de datos residuales

A unique component in the current study is in the collection of the lived experiences from three different groups including youth, parents, and three dyads of both youth and parents. This additional level of interpretation shows some overlap and some differences in perspectives across these groupings. For instance, in comparing youth to parents, there were many congruencies in how a youth and parents articulated their story and journey. However, there were also details apparent in one journey that were absent in the other, and at times different factors were selected as main attributors to access and recovery. This concept is similar to those found in other

qualitative mental health work that takes on multiple perspectives of parent and child. For instance, Kyriacou et al. (2009) found that parents and youth agreed on many items relating to emotional awareness and understanding such as the youth having oversensitivity to emotions, and difficulties forming relationships. These two groups differed in the parents remarking youth who had anorexia nervosa lacked in empathy while the youth cohort did not mention this theme at all in their discussion. This is interesting as in the current thesis there were certain events that parents included in their rendering of the journey that youth did not mention at all.

In this thesis, youth stood alone in speaking about specifics concerning care providers and their use of insensitive comments. For example, youth participants mentioned “Some nurses [in the hospital] would even talk about calories, and fat, and stuff that wasn’t very good in the situation”, and that “it didn’t seem like everybody was as educated on choosing your words wisely, cause you really have to be careful what you're saying to some of the girls cause they, they will look for anything, and then they will run with it and be afraid”, and also the following

being said in one of the health care settings “another fucking eating disorder patient, I don’t understand why these people just can’t eat.” This issue was brought forth by several youth, who alluded that care providers did not have the awareness or education about what should not be openly talked about for fear of triggering anxiety. Some parents also mentioned that they had learned what things to avoid speaking about through the parent support groups but they did not discuss a problem with health care providers making insensitive comments.

Parent participants tended to speak more about the issue of costs related to accessing services. In some of the youth conversations there was a light discussion around the topic “if I hadn't of gotten into [the outpatient centre], I wouldn’t have been able to continue with that psychologist, it was very expensive.” However, most of the parents spoke to the issue at length and as it was a point of focus in their interviews, such as how; “frustrating” and expensive the process of finding a psychologist was. This was echoed by several of the parent participants.

In examining the transcripts from the dyads, a unique set of divergences and observations were made. For instance, in one youth and parent story, the parent mentioned at length how beneficial their family vacation had been for their child’s recovery, in that this was a major turning point in their journey. However, the youth never mentioned this trip throughout their entire interview, and certainly did not highlight it as a turning point. It is interesting to observe that this turning point was discussed in such detail from the parent perspective, yet was non- existent in the youth’s rendering of her journey. Similarly, in another dyad, one parent spoke of how music was “really, really helpful” and how “music saved our [child].” However, the youth does not mention music at all throughout their interview. This is an area of divergence as well whereas the parent has viewed music as a pivotal part of the journey and the youth has not included music in his story. In a separate dyad, one parent discussed at length how

“phenomenal” her son’s motivation was for getting well. Even when speaking about how good certain services were, she noted “it was really only useful because he wanted to resolve it”, and she further went on to note that this willingness to get better was present throughout his entire journey right from the start, “He (the youth) really drove it, you know he was, he's the one who brought it to me, and then he took every step that was recommended to us.” The youth had mentioned the idea of his motivation to recover at one point in his story, but otherwise did not dwell on this point in the interview. This is unique in perhaps from an external and parental perspective the participant could really see how motivated her son was, and how he was a major facilitator to his own recovery. The youth certainly did not perceive his motivation to get better as a main facilitator in his recovery.

While there was some divergence, narratives did for the most part flow similarly from youth to parent in the dyad clusters. There was a discussion of early life, accessing a service or services, events throughout this service, discussion of school, and recommendations. When looking at the dyads, the early story was quite similar from both youth and parent. There were some small points of difference such as when a parent would fill in a bit more detail regarding a certain service provider. For the most part, the stories were all congruent in how the journey unfolded, such as with both participants in one dyad speaking of early isolation, and another dyad speaking about how the youth had spent their holidays, and their early eating disorder signs. Interestingly, in one dyad, both participants spoke in detail about the issue of the current obesity discourse, and it’s relation to the health education curriculum. They both also had extremely positive things to say about the adolescent eating disorder service. This idea of how care was perceived overall was congruent in and across dyads. Another dyad spoke about the benefit of the outpatient program, specifically targeting the work of the psychologist, “[the

psychologist was] the biggest step in resolving or getting her [his daughter] to the point that she’s at now (parent)” and “she’s [the psychologist] the best one I’ve been too (youth).” This example of congruency was observed again and again throughout the dyads. Even in some dyads,

participants used the exact same phrasing, such as referring to the outpatient workers as “[the name of the outpatient program] zombies.”

This multi-perspective interpretation brings a few thoughts to mind, ideas that are not rendered from looking at how youth or parents individually articulated their journey. For instance, the quality of the same care received is interpreted differently depending on perspective. Some participants from both youth and parent groups echoed similar thoughts towards care but the youth group appeared more emotionally connected to these opinions. In most parent cases, there were general sweeping comments made about care but the youth had more specific examples and more insight into the care process. As mentioned above, parents saw access to a psychologist as a major barrier because of the lack of availability and the cost. Some youth mentioned that the sessions were expensive but did not speak about this issue with the same vigor and detail as the parents. Both groups spoke about similar recommendations in increasing transition measures between services and education surrounding eating disorders for health care providers and the general public.

These considerations provoke more questions about why parents voiced elements of the journey with such detail and importance while youth did not address these elements at all. Is it perhaps that the youth believe these elements were not important for their story, or that they were not appropriate for the current study, or that the youth simply forgot this piece of their story. It is interesting that youth focused on the care or lack of care they were provided throughout these differing eating disorder services, where parents did not. Through reading the narrative

summaries, and the full narratives one can discern their own critical findings when exploring these multi-perspective stories of access and care, which will perhaps incite more questions than answers. This is a fascinating avenue for future research and/or in the follow-up interviews (as a part of the ACCESS-MH project) with the same participants over time. They could shed light on the similarities and differences in perspective that could be of use for targeting information, education and practice to each group.