Memo for data about QOL indicators for hearing-impaired children
Instead of staying consistent throughout this interview, I found that the themes here evolved as the focus group progressed. Although this in some ways highlights one difficulty in conducting a focus group – being unable to control the tide of discussion and the flow of information – in this case I think it works to the interviewer’s benefit. In the beginning of the interaction, when attempting to define the objective of the group / the main question, the interviewer stumbles: “Yea what I was trying to get are are there any indicators that specifically allow you to see how, I mean its an interesting question just how do you define an infant’s quality of life but what are the indicators that an infant has good quality of life.” His speech pattern makes the question unclear and appears to alienate the group. He ends up making a suggestion that perhaps parents are able to have a good QOL while the child might be suffering. The group’s response is swift, dismissive and judgmental: “I think that’s rare.” As the conversation progresses, the group is more able and willing to address the initial question at hand: how do you define an infant’s QOL, specifically when they have hearing impairment?
Several themes emerged from our discussion, although at times we did disagree over the interpretation of a group member’s response in the transcript.
First, Is there a difference between the QOL of the parent and the QOL of the infant?
Second, What does it mean to have meaningful social interaction?
Focusing on the second main theme, we identified subthemes: non-verbal communication, family relationships, mental health, age discrepancy and social inclusion.
Non-verbal communication
“A baby can be profoundly deaf and just amazingly communicative and happy right?”
“When a child has hearing loss, they’re you know communicating through other cues. They’re communicating more through like eye contact and using all of their other senses a lot more…”
“…so the young ones you look at nonverbal intent, initiation, back and forth vocalization…”
“they exhibit frustration and behavioral issues like more difficulty of the parent to redirect and to help with the situation because of nascent communication delays….It’s all very closely tied to the communication…”
“You can argue that a deaf child who is given sign language in one form or another actually has a higher quality of life.”
The excerpts addressing this theme came from both the moderator and the group. All parties felt strongly that children with sensory impairments are still more than capable of communicating, in particular to their families, and of forming the “typical” infant bond with their parents. Although forming an emotional bond was felt to be relatively easy for these children, there was some discussion about the role of sign language, and a suggestion that perhaps children who are taught sign language as a substitute for verbal communication are more easily able to communicate. As a result the group felt that there was likely less “frustration” for children able to sign. So there was some acknowledgement that more complex types of communication may be sources of emotional stress for children with hearing impairments. One group member felt this perspective was being “audio centric,” however.
Social Inclusion
“you know how is he knowing what I’m talking about and what we’re laughing about?”
“…they were talking about at Thanksgiving when everybody is telling their stories like even then the parent 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.”
“you know the child with hearing loss or any other disability for that matter tends to get a difference type of attention. They get a lot of attention but it’s a different type of attention.”
“They tend to be more isolated.”
There was some disagreement within the group over what it meant for the hearing impaired children to feel “included.” One could argue that because we are social creatures, feeling like a social “outsider” might negatively impact our quality of life, especially as children when our ‘sense of self’ is still developing. On the one hand, there was the providers’ recognition that because certain types of communication were more challenging for these children, they frequently had to advocate for themselves in order to understand what was going on in “normal” or fast-paced conversation, making them relatively more isolated. On the other hand, however, were those group members who maintained that these children are often “doted” on and in some ways are more at the center of attention – especially when at healthcare provider’s appointments – than the families’ other children without impairments. Maybe there is a certain type of attention or social inclusion that is beneficial, and other types that are more harmful to the hearing impaired children and their families.