Our group discussed a transcript of a focus group for providers that dealt with children with hearing loss. The main theme of the section we read was about quality of life of the infant with hearing loss.
Major topics that emerged from our discussions and codings included the following:
- defining quality of life of an infant
- who makes the definitions of that quality of life (infant/family/provider)
- differential experiences of the child with hearing loss, the parent, and the siblings and the roles each play
This memo focused on the role of the deaf child and his/her sibling and the feeling of being left out on both ends.
Even though I think the babying in true, it reminds me of the conference that we had in May and how they were talking about at Thanksgiving when everybody is telling their stories like even then the parents will say “oh I’ll tell you later.” Like “what’s going on? What’s going on?” “Oh I’ll tell you later” As if it wasn’t a big deal. I know when doing Listen Up with some familiies I put that in as a tip like have compassion with this child and if they’re advocating for themselves don’t say like that’s not a big deal. And she’s like “oh y god I’ so guilty of this with my own child like I do this all the time” and for my other daughter too she’s engaged in the conversation so that the same time there is that difference.
In my experience, I actually see that difference a lot. And what I notice is that you know the child with the hearing loss or any other disability for that matter tends to get a difernt type of attention. They get a lot of attention, but it’s a different type of attention. Where a lot of responsibility is usually placed on the other children. So if there are older children, they tend to do things for everybody else. They tend to be more isolated, like they’re always waiting in the waiting room when they come for the visit. The parents might mention “yes we have two other children” “Oh are they at home?” “No they’re in the waiting room waiting. They’re here but they’re not here.
Codes:
Attention (different amounts and types) – Parents had moments where they paid perhaps too much attention to deaf child “babying” and moments where they didn’t pay enough attention. And these experiences had implications for both the child and their siblings. It seemed clear that when the context was medical, the attention was focused on the deaf child but when it was about social or more social/normal contexts, they were left out.
Left out – Tied to the attention concept, the parents’ attention determined the experience of their child. So for the Thanksgiving dinner, the parents being dismissal of their child’s effort to be included meant they were implicitly leaving that child out. In the waiting room, the siblings are present but not part of the medical experience because the parents are focused on the deaf child.
Deaf/not deaf world – Tied to the above, there is the concept of the deaf world that seems to include doctors offices where the siblings who can hear are left out and the hearing world like the Thanksgiving meal. It seems like there is the ability to bridge those gaps are determined by the parents’ actions which often do not seem to do that successfully.
Responsibility – A theme that emerged seemed to be that everybody in the family of a deaf child has some added responsibilities about helping the child. Both parents and siblings experience this and it appears that sometimes they step up to it and sometimes they forget their roles and don’t.
Memo:
The codes seemed to lead and overlap with one another a lot. In choosing codes, I struggled with whether I was being repetitive and creating a lot from nothing. There’s clearly one interesting theme here but I wondering if I should have picked a broader set of themes to tie together, or whether it was fine to just really pull out individual overlapping codes that were getting at similar concepts from different sides.
In terms of the content, I found this section and theme really compelling. It was a really interesting juxtaposition of the different ways that kids with hearing loss and the siblings of those kids get left out in totally different ways. The Thanksgiving table seemed like a really powerful image of an important family gathering and bonding time where the deaf child is left out and his/her efforts to be included are dismissed. And the second image of the siblings in the waiting room, “there but not there” also seemed powerful. Those two combined seemed like it provided some good insight into the themes of two worlds of hearing and not hearing, and the associated issues around that: responsibilities of family members, bridging those words, isolation, dismissal, etc.