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The investigators administered the survey twice; the first administration informed interview protocols and assisted in the refinement of interview questions.
Grounded theory - which posits that theories of certain phenomena emerge and shift with the process of data collection and analysis – informed interview guide development.
Utilising highly informed interview partners allowed extraction of high-level barriers and challenges to the proposed linkage, but it also means that the views described here do not necessarily reflect the opinions of frontline healthcare professionals.
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Participants were informed interviews would be tape recorded and that no identifying information would be used.
Phase I data was descriptively analyzed and also used to inform phase II data collection, both as a sampling frame and as a source of information to inform interview guide development.
Although considerable attention has been given to the content of the informing interview, few researchers have looked at the affective manner in which the information is given.
In that sample of parents, the affective tone of the communication was the second most frequently described characteristic of the informing interview.
Early writers in this field [ 3, 10, 11] made specific recommendations for the informing interview that have been reiterated and researched over the years.
The parents' experience in the initial informing interview can play a major role in the family's perception of the child and their long-term adjustment to the child's disability [ 3- 6].
While an interview schedule informed discussions, interviews were informant-led as far as possible and concurrent data collection and analysis led to iterative modifications of the interview schedule [ 11].
Issues raised in earlier interviews informed later interviews, and were used as probes to add to our understanding of views.
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