Table 3.
Resources helpful for caregivers during the tracheostomy decision-making process: Illustrative quotes of caregiver and clinician perspectives
| Domain | Caregiver Quote | Clinician Quote |
|---|---|---|
| 1. Social network (e.g. spouses, other family members, friends, and clergy) | D03: At first I didn’t want to talk to nobody about it, really…I talked to Mom and that was the main one that I have always talked to on decisions…but that was the hardest thing for me to do, was to make any decision. | Nurse B05/ FG1: Another thing you can suggest is they can bring a family member that is in the medical field or that is not emotionally so distorted that can help them, that can listen with them. That’s what some of our families did… |
| 2. Healthcare providers | D01: He was [child]’s primary nurse because he always had her. And he was always good about answering questions for us as well. He helped me get what I needed, like the confirmation of could she be extubated. He was the one that kind of pushed that. Confirmation for me to know, ‘Okay, she does need a trach.’ | Physician B28/ FG4: There’s a lot that they [palliative care] provide because they develop a relationship…we’re talking about that relationship of advocacy, the palliative care team really does that well. So when the patients come into the ICU and the palliative care team comes in, it almost creates - I mean it’s a security blanket for them. |
| 3. Other parents/caregivers of children with tracheostomy | D11: She [parent of a child with tracheostomy] took me to her room and she showed me her little boy… she talked to me. I believe we did talk a little bit about the trach. She helped me out a lot with everything… with the trach and the nursing, she could tell me about that stuff, because she’d been there… She was helpful. | Physician B19/ FG3: We actually had a situation from the PICU where the family was completely terrified of a trach…We were able to say, “Hey, why don’t you come talk to this mom in our trach/vent clinic,” and they could see the child. That really seemed to be the tipping point for them…other parents getting involved, from my experience, has been very helpful for that parent trying to make that decision… |
| 4. Tangible (e.g. print materials, videos, tracheostomy tubes, mannequins, simulation lab) | D35S: When we came to a decision to agree to have it and then we learned about it….They gave us some papers and books and some specialists from that area came and give us some conversation and lay out all the information about it. That’s when we learn about it. | Nurse B09/ FG1: …maybe having a visual or a video, something that they can take the time and watch and absorb all the information about the technical parts of the trach and what it looks like and how it works. Not just the emotional part of it but the actual education of technical parts of it so they can understand what we’re talking about. |
| 5. Internet (e.g. website, social media, online health community) | D21: we have talked to other moms. There is a community of us, there is a <diagnosis> Moms community on Facebook, so we all talk to each other about the kids. | Physician B20/ FG3: I think there’s a Facebook page - saw something today…something about “moms with babies with trachs.” It’s private so you have to ask to be let in. This mom had found that very helpful. |