QOL memoing and coding
Unfortunately, I missed the group session, so this is more of an individual approach to the transcript.
Coding:
The main themes that arose centered on:
Quality of life: There were differing views in regards to when this really became an issue. “The quality of life for the child… doesn’t really manifest until they’re a little bit older in that 1-2 age…”. Other participants felt this was an issue from birth and during infancy.
There also seemed to be the feeling amongst the group that the quality of life for the child was tied to that of the parent. “You can’t separate the two..” This was additionally felt by the provider, who positioned themself as providing care for the whole family, not just the child. “…quality of life I think it starts in the family.”
Communication and feeling connected.
A common theme was how both verbal and non-verbal communication were related to feeling connected. Some felt non- verbal cues could be an equally effective form of communication. “I mean she looked at you and she smiled. There’s definitely a connection there.” “They’re communicating more through like eye contact and using all of their other senses” “You can argue that a deaf child who is given sign language.. has a higher quality of life”.
However, there were pervasive sentiments of feeling an inadequate connection because of lack of verbal communication. One parent commented on how they felt they couldn’t calm their child until physical being present. “There is definitely auditory connection at younger age…” Another expressed concern “how is he knowing what I’m talking about and what we’re laughing about?”.
Communication was also directly correlated with quality of life. “They exhibit frustration and behavioral issues…because of nascent communication delays”. The ability to maintain connection through communication was key to feeling included and thus directly related to quality of life.
Expectations
This was touched upon several times in different contexts. When discussing quality of life, “parents are going to be applying what’s important to them”. The expectation of what is a good life or quality of life is dependent on the individual.
Additionally, later in the focus group, there was the discussion of expectations of children with hearing loss. “She says she’s guilty that her expectation are so much lower than what she gives her credit for.”
It was brought up again during the focus group in terms of the expectations of a culture. “You’re given birth to a child from a culture.” It seemed that as a parent who can hear, you expect your child will be able to hear and when that isn’t the case, you had to bridge the gap. The quality of life of the child seemed to be contingent on how successful that gap was bridged.
Memo:
There appeared to be several themes that emerged throughout the focus group. One theme would appear to lead into another and there was significant overlap. Given that it is a focus group, it was hard to tease out the different voices. That made it harder to determine if there was a pervasive theme amongst the group or if it was more of just an individual sentiment.
As someone who trained in Pediatrics, I have some bias towards the subject matter. I found myself in agreement with the member of the focus group who talked about their mother ‘babying’ their deaf sibling. I have found that there is a lot of that approach to parenting in regards to children with chronic illnesses, especially children with cancer. It can often times be frustrating, because I know that many times, the children are far more capable than they are being given credit for.
I also have a lot of personal emotional attachment to the term “quality of life”. I think that seeing it play out in different settings, especially in the hospital, has given me a slightly jaded view of what I think should count as quality of life. I think it is important to acknowledge that while coding this transcript, since I might be more sensitive to these issues and be reading meaning into some comments that might not actually be the case.