TABLE 2

Interview Guide

First interview
    Receiving and reacting to news of positive screen result
        What did you think about when you found out that you had to have your baby checked out because of the newborn blood test?
    Experiences of evaluation at the metabolic treatment center
        Can you describe what has happened so far in the follow-up for the newborn blood test; what has this been like?
        What kinds of things did you talk about?
    Perspectives on follow-up and awaiting results
        What are your concerns while you wait for the blood/urine test results?
        Are you doing anything different for your baby because of the clinic visit?
        Have you talked with anyone about the follow-up for the newborn blood test?
            What did you talk about?
        Did you look for information on about the newborn blood test or the condition your baby might have?
        Is there anything you want to tell me about your experiences thus far that I haven't asked you about?
Second interview
    Responses to results of diagnostic evaluation
        What do you think about the blood (and/or urine) test results?
        How do you think this will (or will not) affect your baby's health?
    Views on the newborn screening evaluation process before and after results
        What did you think was helpful or upsetting about the newborn blood testing?
            Prompts
                Initial contact with the person who spoke to you about the newborn blood testing
                Care and treatment at the clinic visit
                Waiting for test results
                Understanding of disorder, test results, and implications
        Is there anything you want to tell me about your experiences thus far that I haven't asked you about?
        How has your thinking changed about the newborn blood test from the beginning when you found you had to have the baby checked out to now?
If confirmatory results were returned to parents before interview 1 was conducted, a single interview was conducting, combining the first and second interview questions