Table 1.

Interview Questions.

I will ask you questions about your experiences and thoughts during transition to adulthood. You can take breaks whenever you become tired during the interview. Transition to adulthood is a process in which a person grows and becomes more able to take care of him/herself and make decisions by him/herself. But, it may be different from person to person, and we are also interested in what “growing into adulthood” means to you.

1.Could you tell me about your experiences during transition to adulthood? (TEA)

2.What are your feelings about growing into adulthood? (TEA) What has it been like for you to grow into adulthood? (TEA) If not addressed by the youth/young adult, ask: −What do you think about achieving independence? (TEA) −Have you felt that there are various possibilities or that you have choices while you grow into adulthood? If so tell me about the possibilities or choices you see. (TEA) −Could you tell me about your thoughts on and experiences of finding a job and working? (TEA) −Could you tell me about your thoughts on and experiences related to building friendship and romantic relationship? (TEA)

3.Have you felt challenged in the process of growing into adulthood? If so, tell me about them. (TEA, EMSCA)

4.What are the positive aspects you have found in the process of growing into adulthood? (EMSCA)

5.What have been the main physical challenges of spina bifida for you? Have you had any health problems last year? (EMSCA, IFSMT)

6.Have you faced any learning challenges? (EMSCA, IFSMT)

7.Do/Did you need extra help when you are/were in school or at work? If so, who offers/offered help to you? What is/was helpful to you? (EMSCA, IFSMT)

8.What tasks have you needed to learn to care for your spina bifida? (e.g., Clean intermittent catheterization, bowel program, doing skin checks?) (IFSMT)

9.Is it important to you and your family for you to learn to do those tasks/behaviors on your own? If so, where are you in that process or how has it worked for you to learn to do these tasks yourself? (IFSMT)

10.Was there a change of health care settings between childhood and adulthood? If so, how did the change of care settings go? (IFSMT)

11.What does successful transition into adulthood look like for you? (TEA)

12.Is there anything else you want to tell me about growing up into adulthood with spina bifida?

Theoretical frameworks that guided the development of each question:

TEA=Theory of Emerging Adulthood, EMSCA=Ecological Model of Secondary Conditions and Adaptation, IFSMT= Individual and Family Self-Management Theory