Table 2.
Semi-structured interviews: Sample interview questions to elicit in-depth information regarding parent’s pre and post experiences with healthcare providers before and after receiving the DMD diagnosis for their child, along with additional examples of parents’ responses.
| Interview Guide | Additional Examples of Parental Responses to Interview Questions |
|---|---|
| 1. I would like to talk about your experience of receiving a DMD diagnosis for your child, specifically your experience with your healthcare provider. Who first gave you the diagnosis of DMD and what was that experience like? |
“We came to realize that the clinic physician was not so much a specialist as someone who was a doctor just kind of assigned to that. Not a doctor who was very passionate about helping with this extremely serious disease.” “You know I can’t think of any way to candy coat it. It was just something we had to endure. But I think that where I was when that phone call came just made it really difficult. I had no time to swallow all that. My son was with me and I had to be happy and smile and play with [name]; there was nowhere to run.” “It took to long, and it is really hard when you don’t know what is happening with your son, you start thinking yes, he has Duchenne, but sometimes you can think no maybe it is not. But really you don’t want to accept that your little boy has Duchenne muscular dystrophy.” |
| 2. What were some of the strengths and weakness of your healthcare provider during that experience? |
“As far as the initial diagnosis, the neurologist that we initially went to, I really liked her, she showed a lot of compassion and was very knowledgeable about the diagnosis.” “He pretty much told us, well he’s two years old; we wouldn’t do anything right now, go home and love him, and you know, let him be a boy. Well, that obviously is not really very acceptable.” |
| 3. What if anything did you really cherish or appreciate about your healthcare provider and what if anything were you not pleased about? |
“We are now surrounded by what I would call a pit crew of doctors…it is the most comforting thing because he is followed so intensely by them, as well as by physicians here at the [clinic]. “So the doctor had said it will be a couple of weeks before we get full confirmation that it is Duchenne. Well 2 weeks went by, then 3, 4, 5 and 6 weeks. I was getting really annoyed and angry. It was like put is out of our misery here, we need to know 100 percent. I finally get a call back from my pediatrician’s office and find out that the results had been sitting on the doctor’s desk for 4 weeks.” |
| 4. How did this experience with the healthcare provider affect you and your family and your view of the diagnosis? |
“So we just felt hopeless as we went through the whole lengthy process.” “So the neurologist where we were at said I’m not a specialist on Duchenne muscular dystrophy but I will help you find one of the best.” |
| 5. What resources did your healthcare provider give you? What did you do after you received the information from your healthcare provider? |
“I think if I didn’t search on my own, I would have been lost, so I feel like I can relate to parents saying they don’t have enough information.” So there is a lot of focus on research and there is a lot of focus on fundraising, which are both needed, but the day to day parenting stuff is really what is not really out there.” ““From that moment on it was pretty much rolling up our sleeves and trying to figure out where to go from there.” |