|Quotations from parents or health care providers (HCPs) related to perceived outcomes|
|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|
*Health Care Provider.
Adams et al.
Adams et al. BMC Pediatrics 2013 13:10 doi:10.1186/1471-2431-13-10