Attached!
Interesting research. It sounds like your primary question is really to find out what the major effects of having a deaf toddler are on aspects of life that can then be used to measure quality of life. Couple thoughts.
1. As you note in your challenges, I think it may be hard to come up with things to measure quality of life for the toddler since he or she cannot tell you and it is difficult to define. It may also make your subsequent questionnaire more difficult to validate.
2. In terms of methods, for the providers I think the focus groups probably make sense and will get you a general consensus on what people who participate in the care of deaf children believe is important for quality of life of the children and their families. For the parents, I wonder if individual interviews would be better than focus groups. You may get more honest answers in one-on-one interviews in terms of how it affects different aspects of their lives (like intimacy for instance).
3. If one of your main goals is to assess QOL for the families then I think whatever method you choose (focus groups or individual interviews) should really be predominately conducted in this group. As I said above, the providers may provide some general information but they are not the ones actually living with the children and they are not the ones whose quality of life you are trying to measure.
Hope this is helpful!
Neelaysh, I can see the value of developing a tool to measure QOL in this population. I can also see why it might be uniquely challenging given the difficulty communicating with toddlers (particularly hearing impaired toddlers). I wonder if there is other literature on measuring QOL in young children and literature on measuring QOL in hearing impaired adults that could help you frame the conversation. Thanks for taking on this important work!
Interesting and challenging topic Neelaysh. I think you've got a couple gem-like ideas in here so let me pull them out and try to polish them up for inspection. You mention challenges of recruitment and the need to engage the deaf community perspective. One productive approach might be to actively partner with folks in the deaf community for this study. There can be drawbacks to working with disease/illness-advocacy groups/communities in qualitative research but in this situation -- where you're trying to devise a new instrument -- the community expertise is likely to be much more helpful than it is a source of bias (which is the challenge). Also, their help recruiting is likely to make things go much easier on that front. The drawback: working with a community group inevitably makes things go more slowly. You need to build in a lot more time for working together collaboratively and oftentimes community groups have a slower timeline than researchers. But, in this case I think the benefits would be enormous so I would consider how you might partner together.