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Table 3 Interview guide example questions

From: Parental coping with uncertainties along the severe combined immunodeficiency journey

Coping strategies

What, if anything, [has helped/is helping] you manage [OR cope with] this [source of uncertainty]?

What (else), if anything, [would have been/would be] helpful for managing [source of uncertainty]?

If you could give advice to another SCID parent about managing [source of uncertainty they are talking about], what would you say?

Changes in coping strategies

Have you noticed any differences in how you respond to [OR cope with] uncertainties in your journey with [Child’s name] now compared to when [he/she] was first diagnosed?

Do you feel that the ways you are managing uncertainty today are working better?