Table 3 Quotations from parents or health care providers (HCPs) related to perceived outcomes
Theme | Quotation | Source |
|---|---|---|
Efficient and timely care | “It’s so crazy coming into the [Emergency Room], and I have to give them all of [my child’s] history, his meds, his allergies. It’s so frustrating. It was so much easier to just hand it [care plan] over to the doctors. I found it saved me a lot of time.” | Parent # 12 |
“The medication piece, I think is one of the most imperative in terms of efficiency and reducing error. A lot of these kids are on multiple medications, and usually the care plan is going to be the best place to look for a comprehensive list of medications because it’s incredibly difficult to find elsewhere.” | HCP*, Focus Group A, Yellow | |
Safety | “If you have current, up-to-date information from all people involved, if you have a centralized person who’s communicating with everybody, obviously that’s going to maximize the patient’s care.” | HCP, Focus Group B, Blue |
Caregiver health and well-being | “It reduces my stress because I feel like there are things I can safely stop trying to keep track of in my memory, without compromising his care. So I also use it as a reference when people are asking me information about his health history. So knowing that I have it as a resource reduces my stress and anxiety.” | Parent # 3 |
Patient and family centered care | There is another benefit I wanted to add. When we are in the hospital and we see doctors for the first time […] they start asking the parents questions. And I can’t tell you how many times I’ve had to give her medical history with all its gory details. And it’s extremely stressful for me. So this [the care plan] saves me from having to deal with that. […] We all go through so much as parents, and we suffer a lot physically, emotionally, psychologically. So this document saves me.” | Parent # 5 |
Care coordination | “It [the care plan] provides a basis or a foundation to begin a discussion. ‘Well, the care plan says this – yes, we will go with the care plan or no, we need to divert from it and this is the reason why’. In its absence, people [health care providers] seem to come at it from a whole bunch of different directions so care seems more fractionated.” | HCP, Focus Group A, Blue |
Continuity of care | “I do think that it’s [the care plan] one way to enable families to not always feel that they need to be physically in proximity to [a certain] provider. They need to be able to look to other providers and [know] that we can support them to do that.” | HCP, Focus Group C, Orange |