I thought of behavioral indicators such as number of cancelled appointments, times late, the length of the assessment process, number of clinicians (second opinion). I would greatly appreciate ideas or research experience.
This is a good question. How about asking parents how they carry over the goals of therapy, i.e., eye contact, answering greetings, etc.?
I think asking them directly would be a valuable way of finding out what impacts on ability to take part in the diagnostic process. Cancelled appointments and being late might not reflect compliance as there may be a number of factors impacting on capacity to make appointments - change of address so didn't get schedule, work commitments, stress, child care, language barrier, etc. Relevant questions might be - who initiated the process - parents or outside agency / professionals? Was there a clear pathway to diagnostic referral? Did parents get information? Does the child have a prior diagnosis? Does a sibling have a diagnosis? Do the parents think the child has ASD? What do parents think can be gained from getting a diagnosis for their child?
A qualitative measure like interviewing them could be used. You can then analyze the data through coding, and if you use a Likert scale, you could apply a statistical analysis. I think the behavior indicators you mentioned are good, but you could turn them into statements in a Likert scale and then have the parents rate the questions.
I would ask it indirectly. By projection. Ask how they think their spouse copes with it compared to themselves.
I think it is useful to read these links :-
Article Parents Suggest Which Indicators of Progress and Outcomes Sh...
Article Parents' Concerns as They Relate to Their Child's Developmen...
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