A theoretical model: characteristics, activating factors and outcomes of care plans
HCPs and parents both identified the care plan as a helpful and needed tool in providing and navigating the complex care of CMC. Participants explained that the care plan described and allowed professionals to respond to their child’s unique health care needs in a comprehensive manner, transcending specific silos of care such as institutions, hospital departments and professional specializations.
Three core components or key themes of the care plan (care plan characteristics, activating factors, and perceived outcomes) emerged through the data to contribute to the formation of a multi-dimensional model of care plan processes and outcomes (Figure
1).
Characteristics of care plans comprise the dynamic and fluid nature of care plans as they are continually updated with new dynamic content. They are built on a foundation of shared values such as reciprocity, engagement and openness among all in the care circle.
Activating factors that facilitate effectiveness include key processes such as the enhancement of relational and communication-based components of care between families and HCPs and across HCPs, organizations and sectors. Key perceived
outcomes were generated, including efficient and timely care, care coordination, continuity of care, safety, patient- and family-centered care, and, ultimately, caregiver health and well-being.
Characteristics of the care plan
Content
Participants identified key components that they felt were essential to the care plan (Table
2). Parents stressed the importance of addressing not only the biological aspects of their child’s health condition but also the social aspects (e.g. supports in home, likes/dislikes of child) within the care plan. A single comprehensive care plan, as opposed to a setting specific care plan (e.g. emergency information forms [
17]), was felt to be most useful because it was one document that outlined all of the child’s care needs in an organized and succinct manner and was therefore useful across the entire health care continuum. Parents, who were typically the main ‘carriers’ of the document, felt that it was “complete” and the only document they needed to carry with them,
Table 2
Parent desired care plan content
• Medication list including drug, dose, route, administration instructions | • Brief description of the non-medical characteristics of the child |
• List of health care providers and contact information | • The child’s development |
• Pertinent family/social information |
• Child’s medical history | • How they communicate |
• Emergency care guidelines | • What makes them smile/laugh |
• Date and author of the last revision of the care plan | • Things they enjoy |
| • Photograph of the child |
• Problem/diagnosis list | • Health insurance information |
• Alerts section | • Glossary of medical terms |
• Allergies | • Summary of technology and/or equipment needs |
• Pertinent diet/nutrition information |
• Information about how quickly the child may deteriorate in a crisis | • A summary of the parent’s role/expertise in their child’s care |
“
It’s really helpful for [the health care team] to get the history, the accuracy of the medications, the dosages, what was done for [my child], and the overall picture of [my child] and not only one side of him, from a hematology point. It’s the whole person here, explained. His whole condition.
” – Parent # 6
Shared values
The care plan reflected the shared values of HCPs and parents, a characteristic considered to be essential to its creation and ongoing use. A useful care plan was one that was collaboratively created and updated by parents and HCPs on an ongoing basis, with regular opportunities for feedback and revisions as described by one parent,
“It was important to me because up until that point I had felt that no one was listening to me. So I met the nurse practitioner and we developed the care plan. She said ‘come into my office, and we’ll sit down and put a care plan together. And this is going to speak for you.’ And that felt really good because everybody kept saying ‘you’re part of the team’, but I never felt part of the team…
” – Parent # 4
Dynamic document
The care plan was described by both parents and HCPs as a dynamic document that served as a road map to the child’s care, changing over time according to the child’s changing health care needs,
“[the Care plan is] a comprehensive road map, or Google map, [or Cliff] notes version for complex patients, instead of a thick chart. That summarizes where you’re at, and where you’re going, and who to contact .
.” – HCP, Focus Group A, Blue
Activating factors: how the care plan works
Participants consistently stated that the care plan facilitated positive outcomes including strengthened relationships and enhanced information sharing. The care plan was felt to foster parent empowerment and credibility, clarify parent and HCP roles, and strengthen parent trust and confidence in the child’s care. The care plan was described as a document that “levelled the playing field” between parents and HCPs. It was felt to clarify professional and parent roles and responsibilities of care,
“
I had this underlying anxiety that they weren’t going to listen to me. Okay, screaming isn’t working, what can I do to have them listen? That’s gone. [The care plan] sort of levels out the playing field. We’re both talking the same language. I may not have medical training, but I have this, I have this piece of paper. It gives me a level of comfort; it gives me a level of security
.” – Parent # 4
In times of medical crisis, having the care plan in hand to share with other providers allowed parents to focus on their role and helped other HCPs quickly become oriented to the child’s history and needs,
“
I’ve never had a Care Plan before until about a year ago…it’s so crazy coming into the Emerg, and I have to give them all of [CHILD]’s history, his meds, his allergies. Oh my god, it’s so frustrating. And the thing is, every different Doctor you have to do the same thing over and over again…My husband, he’s lost, he can’t do it at all, it’s too much for him…It was so much easier to just hand it over to the Doctors. This is his Care Plan, and I found it saved me a lot of time.
” – Parent # 12
The care plan was also felt to enhance health-related information sharing. Participants stated that the plan improved accessibility of care and provided a starting point for discussion about the child’s care, for both HCPs and parents. HCPs expressed how the care plan provided an easily accessible and comprehensive summary of the child’s history, thus facilitating commonplace and difficult discussions with parents. In this respect, the care plan acted as a point of entry to efficient, comprehensive and informed care,
“Instead of taking the history from the beginning, you can confirm things that you see on the care plan with the family. It gives you a starting point for discussion, especially difficult discussions. And if there’s something that you see in the care plan that you’re not sure about, then you can find what you’re looking for in the chart. And it’s much easier because you know what you’re looking for.”
– HCP, Focus Group B, Purple
Pertinent health care information was easily and efficiently relayed to HCPs, in turn allowing them to act quickly and confidently. Parents whose first language was not English also expressed that it helped them convey the complexities of their child’s health care needs with more confidence. Moreover, the usefulness of care plans was felt to extend beyond the health care system through enhancing relationships and information sharing across sectors,
“I’ve had the opportunity to collaborate with the complex care team in getting some of these patients home and in the community, and working with them, and caring for these children as they transition into the palliative phases of their illnesses. The Care Plans have been extremely helpful in helping to guide us in what’s happened until this point, and the continuing care, and the advice to our community partners as we help manage them out in the community.”
– HCP, Focus Group C, Green
Perceived quality of care outcomes
Care plans were perceived to contribute to quality of care outcomes (Table
3). These potential outcomes, many of which are consistent with the Institute of Medicine’s domains of quality [
34] and/or key constructs of the medical home [
35], include enhanced patient safety, caregiver health and well-being, patient- and family-centred care, efficient and timely care, care coordination and continuity of care including timeliness of admission to hospital and medication requisitions.
Table 3
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 |
Parents reported feeling less stressed when they were able to rely on the care plan for information as opposed to having to recount details of their child’s medical history. It acted as a supportive tool as it alleviated the burden of reciting their child’s medical history “one more time”. HCPs identified that the care plan contributed to the continuity of their patient’s care as they were able to work from a document that had been created by one responsible HCP that provided them with the child’s health background and connected them with the child’s larger health care team.