Co-creation and evaluation of online care maps for children with medical complexity

Abstract

Background

Care maps are a caregiver-created diagrammatic tool to support the care of children with medical complexity (CMC). They provide a high-level overview of care, allowing the care team to appreciate the interrelatedness of medical and non-medical aspects of care. Limitations currently exist for the usability, shareability, and integration of care maps into clinical care as they are typically paper-based and caregiver-held. Therefore, the aims of the study were to (1) collaborate with caregivers and care team members (CTMs) of CMC to determine the design requirements and develop an online care map, (2) assess usability, and (3) explore its feasibility and utility from multiple perspectives.

Methods

This mixed methods study utilized an exploratory sequential design. In Phase 1 (Design and Development), the design requirements and utility of an online care map were identified through semi-structured qualitative interviews with caregivers and CTMs. In Phase 2 (Usability Testing), caregivers were monitored for errors and efficiency while completing a standardized task on the online care map. In Phase 3 (Feasibility Testing), caregivers created, updated, and shared online care maps that were housed within a patient-facing online platform accessible to CTMs. Caregivers and CTMs reported their usage of the care map and a descriptive visual content analysis of the care maps was completed. Semi-structured interviews with caregivers and CTMs were conducted to explore the use and feasibility of the online care maps. Qualitative interviews were analyzed using inductive content analysis.

Results

In Phase 1, interviews were conducted with caregivers (n = 16) and CTMs (n = 16). Four themes related to the utility and design were identified: (1) simplified snapshot, (2) envisioned use, (3) caregiver hesitancy, and (4) design modifications. The online care map prototype was modified accordingly. In Phase 2, half of the caregivers (n = 5) made one or more navigation error while using the care map. Nearly all caregivers (n = 9) completed the care map task successfully. In Phase 3, thirty-six caregivers registered on the online platform, with 70% (n = 25) creating a care map. Four themes were generated from interviews with caregivers (n = 15) and CTMs (n = 13): (1) care maps in clinical care, (2) enhanced understanding of the bigger picture, (3) uncertain value and redundancy, and (4) innovations for greater impact.

Conclusion

An online care map creation tool was co-developed with caregivers and CTMs for CMC. Caregivers and CTMs appreciated online care maps as an organizational, coordination, and communication tool, providing an enhanced understanding of the complexity of care, a holistic view of the child, and guiding care discussions. Some caregivers did not use the care map due to a perceived lack of value or redundancy. Future research should explore the integration of care maps into electronic medical records and care pathways and evaluate the impact on clinical outcomes.

Background

Children with medical complexity (CMC) are characterized by complex medical conditions, technology dependence, and high healthcare utilization across the home, hospital, and community settings [1]. Care coordination, namely the sharing of medical information with the appropriate providers and organizing streamlined care, is vital to ensure appropriate and efficient healthcare delivery across settings [2].

Care maps are a caregiver-created diagrammatic tool that can be used to improve care coordination for CMC [3,4,5]. They provide a high-level overview of the multiple aspects of care (both medical and non-medical) for CMC and allow the care team to appreciate the interrelatedness of the various aspects of care and caregiving responsibilities [4, 6]. Caregivers have reported that care maps help them communicate their child’s needs and care priorities more effectively [4, 6]. A care map is typically a one-page image [4] that is either hand-drawn or, less frequently, created electronically by the caregiver. The child is often at the centre of the diagram, with multiple off-shooting branches representing different aspects of the child’s care (e.g., school/school nurse, occupational/physical therapy, individualized education plan, activities, etc.).

Care map creation is a family-driven, person-centred process that highlights what is important to the family, communicating both the big picture and intricate details of the resources needed to support a child and their family [7]. Their integration into clinical care offers context about a family’s experience and respects the caregivers’ experiential wisdom in a standard patient care document, promoting improved understanding and integration of the family’s experience in care decision-making. Previous research [3, 4, 6] demonstrates the usefulness of care maps for families and health care providers (HCPs) of CMC. Unfortunately, care maps are not routinely used or practically integrated into clinical care. Care maps are often paper-based and held solely by caregivers outside the medical record, limiting their current utility. An online, customizable approach to care maps has not yet been explored [4, 7]. Further study of this concept is needed to understand the feasibility and utility of online care maps in the care of CMC. Co-creation and development with caregivers and CTMs is necessary to create a tool that will add value to the child’s care [8]. Thus, the aims of the study were to (1) collaborate with caregivers and CTMs of CMC to design and develop an online care map creation tool, (2) assess usability, and (3) explore its feasibility and utility from multiple perspectives.

Methods

Study design

This mixed methods study utilized an exploratory sequential design [9] to assess the design requirements, usability, feasibility, and utility of a care map on an online patient-facing platform, from the perspectives of caregivers and CTMs. Caregivers included parents or guardians of CMC and CTMs included HCPs [e.g., nurse practitioners (NPs), physicians] and non-HCPs (e.g. teachers, relatives). An online care map prototype was created based on the traditional paper-based design [3]. In Phase 1 (Design and Development), caregivers and CTMs were asked about the utility and design of the prototype. These data were used to co-create the next version of the online care map. In Phase 2 (Usability Testing), caregivers were observed completing a standardized task on the online care map. In Phase 3 (Feasibility Testing), caregivers used the online care map feature to create, update, and share care maps with CTMs. This study is a component of a larger mixed methods study to develop and evaluate the implementation of a novel online patient-facing platform (Connecting2gether) for families and CTMs of CMC to enhance collaborative care, care coordination, and communication.

Platform description

Connecting2gether (C2) is a web-and mobile-based patient-facing platform for caregivers and CTMs of CMC. C2 provides secure access to medical information across the continuum of care while allowing families and their care teams to communicate and collaborate using health trackers, secure messaging, medical summaries (care plans), educational resources, and care maps. C2 was designed and developed in collaboration with caregivers and CTMs of CMC and NexJ Health [10], a provider of patient-facing health management solutions for chronic disease management.

Caregivers could invite members of their child’s care team to C2, allowing them to view and/or edit aspects of the child’s profile as deemed appropriate by the caregiver. The study’s Research Coordinator acted as the Platform Concierge (PC) and was available to assist with technical issues throughout the study. C2 was accessible through desktop, tablet, and mobile (iOS and Android) devices. A username and password were required. All C2 data were stored on IBM Softlayer servers, which are certified for compliance with the Health Insurance Portability and Accountability Act, Federal Risk and Authorization Management Program, and Federal Information Security Management Act. Additionally, these servers are fully compliant with ISO 27001, 27017, and 27018 standards.

Online care map

The care map feature on C2 provided caregivers with the opportunity to create, update, and share a care map with their child’s CTMs. CTMs had the option to view and edit care maps created by caregivers. The care map had the name and photo of the child in the center with the option to add primary branches and secondary bubbles. A branch commonly signifies a main area of care or importance to the child (e.g., school, medical equipment) and secondary bubbles represent specific areas related to the primary branch (e.g., teacher, oxygen). Primary branches and secondary bubbles were labelled by caregivers (see Fig. 1 for sample care map).

Participants and recruitment

Phase 1 (Design and Development) and phase 2 (Usability Testing)

The Complex Care program at The Hospital for Sick Children (SickKids) is part of the Complex Care for Kids Ontario (CCKO) which is a provincial program led by the Provincial Council for Maternal and Child Health to improve care continuity, collaboration, and service delivery for CMC and their families [11]. CCKO operates with a ‘hub-and-spoke’ model where the hubs serve as the regional lead sites and spokes are the community-based clinics. Caregivers of CMC were recruited from the Complex Care program at SickKids, which is the regional hub, and the community-based sites of CVH and RVH in Ontario, Canada.

Caregivers were eligible for study inclusion if they were the primary caregiver of a CMC who had been in the Complex Care program for at least three months. Caregivers were excluded if (1) the clinical team felt research participation would be an added burden due to challenges including end-of-life, acute deterioration, or caregiver physical/mental health concerns, or (2) they did not speak English. English-speaking CTMs, including HCPs in community and hospital-based settings and teachers of CMC, were also recruited.

Eligible caregivers were identified by Complex Care NPs using purposive criterion sampling [12] to ensure rich perspectives and diversity of background, income, age, experience with care, and years in the Complex Care program. Separate recruitment letters were mailed for Phases 1 and 2, followed by a phone call from the Research Coordinator two weeks later to assess interest and obtain informed consent. If a potential participant’s child was admitted to the hospital or attending a clinic visit, the caregiver was approached by a member of the child’s care team about the study and met with the Research Coordinator if interested. Eligible CTMs received an email from a research team member that described the study and were subsequently contacted by the Research Coordinator. The recruitment targets were 7–10 caregivers and 7–10 CTMs for Phase 1 and 8–10 caregivers and 8–10 CTMs for Phase 2.

Phase 3: feasibility testing

The same inclusion/exclusion criteria and caregiver recruitment methods were employed as in Phases 1 and 2. Complex Care NPs were approached to participate as part of a caregiver-NP dyad before caregiver recruitment. This was done to ensure that caregivers had their child’s primary healthcare worker on C2. NPs were emailed an invite link to register on C2.

Caregivers and NPs received training from the PC before registering on C2 to learn how to use C2 and the care map. A care map user guide was also available on C2 and outlined what a care map is, how to create a care map on C2, and ideas for content. After registering, caregivers could invite members of their child’s care team to join C2 by inputting their email addresses. If caregivers could not obtain an email address, the PC could send an invite to the CTMs at the caregivers’ request. Invited CTMs received an email from C2 with the option to register and were asked to indicate if they agreed to be contacted about the study. Those who agreed were contacted by the PC with information about the study and to obtain consent. CTMs that declined to participate in the study could still use C2 with the caregiver(s) that invited them.

Caregivers had access to C2 for six months. CTMs had access to C2 as long as the inviting caregiver retained access. When the caregiver’s access concluded after six months, the CTM’s access also ended. Therefore, the duration of access for CTMs was dependent on when they were invited by caregivers. The recruitment target was 30 caregivers and 20–40 CTMs.

At the end of the study, participating caregivers and CTMs were approached to take part in a semi-structured qualitative interview to explore their experience using C2 and gain a deeper understanding of how they used the care map feature. Separate consent was obtained for participation in these interviews.

Data collection

For Phases 1–3, caregivers and CTMs who consented to participate completed a demographics questionnaire in person or online via Research Electronic Data Capture (REDCap) [13]. Clinical characteristics of the CMC whose caregivers participated were obtained from the medical chart by a research team member.

Phase 1: design and development

Semi-structured qualitative interviews were conducted with caregivers and CTMs in person, on the phone, or virtually via GoToMeeting [14] by a research coordinator (MB) trained in qualitative interviewing. Caregivers and CTMs viewed screenshots of the platform prototype, including the care map, and received a brief description of each feature. This was paired with questions about the design requirements and utility. The interview guides were revised three times during the data collection and analysis [15, 16] to explore the depth of concepts further [see Additional File 1 for the final versions].

Phase 2: usability testing

Usability testing was completed with caregivers and CTMs to determine the usability of C2 and further refine the prototype [17, 18]. The testing occurred in person and was audio-recorded. A research team member observed participants complete a series of standardized tasks while ‘thinking aloud’ about their likes, dislikes, and encountered difficulties. Caregivers had six tasks to complete, including one care map related task. Caregivers were asked to add one primary branch (‘hospital’) and one secondary bubble (‘Dr. Doctor’) to the care map. CTMs had seven tasks to complete but were not given any care map tasks since the care map is a caregiver-created tool. Therefore, the usability testing results for CTMs are not included in this paper.

The research team member documented the session length, errors, and the time to complete each task [19]. Errors were categorized as navigation, presentation, or control usage errors. Navigation errors were defined as failures to locate functions, excessive keystrokes, or failures to follow the recommended screen flow. Presentation errors included failures to locate and properly act upon desired information or selection errors due to labelling ambiguities. Lastly, control usage errors were improper toolbar or entry field usage.

Phase 3: feasibility testing

Caregivers and CTMs completed a ‘Comfort with Technology’ survey at the beginning of Phase 3 and a care map usage survey at the end to evaluate reported care map use. The ‘Comfort with Technology’ survey inquired about participants’ access to computers and internet, comfort using various technologies (such as smartphones, social media, instant messaging), and the amount of time spent using these technologies. Both surveys were administered via REDCap [13]. Care maps were saved at the end of the study for visual content analysis.

Two research coordinators (MB and CM) with experience in qualitative interviewing conducted semi-structured interviews by telephone. Interviews explored how caregivers and CTMs used C2 and the care map, the challenges experienced, and the impact on care. The interview guides were revised twice during data collection and analysis [15, 16] to ensure a full exploration of concepts [see Additional File 2 for final versions].

Participant incentives

Caregivers and CTMs received a $20 gift card for participating in Phases 1 or 2. For Phase 3, caregivers received a $20 gift card at the beginning of the study and a $40 gift card after completing the end-of-study questionnaires. Participating CTMs that completed the end-of-study questionnaires were added to a draw for a $100 gift card. Complex Care NPs who participated in Phase 3 as part of the caregiver-NP dyad were offered a nominal academic stipend to support their educational or professional development. Caregivers and CTMs who participated in the semi-structured qualitative interviews for Phase 3 were provided with a $20 gift card.

Data analysis

Data from the demographics questionnaire, comfort with technology survey, and clinical characteristics were summarized using descriptive statistics. The qualitative interviews were audio-recorded, transcribed verbatim, and de-identified. Data storage and analysis were supported by QRS NVivo 12 [20]. Qualitative interview data from Phases 1 and 3 were analyzed by the method of inductive content analysis [15, 16] to develop an understanding of the design requirements, utility, and experience using online care maps from the perspectives of caregivers and CTMs. Two research team members familiarized themselves with the data by thoroughly reviewing the interview transcripts. Open coding was employed to identify and categorize content, generating a preliminary list of codes. The coding system was adapted and refined through continuous review of the interview data. The team members engaged in regular discussions to develop themes, ensuring intercoder congruity and agreement.

Care map design suggestions provided by caregivers and CTMs during the semi-structured qualitative interviews in Phase 1 were summarized and quantified. These were reviewed with the technology partner at the end of Phase 1 and prioritized based on the frequency of the suggestion and the feasibility of the modification. The prototype was modified accordingly for Phase 2 (Usability Testing). Usability data from Phase 2 were summarized and reviewed to inform the prototype design and participant training for Phase 3 (Feasibility Testing).

The care map usage survey in Phase 3 was analyzed using descriptive methods. The care maps were analyzed using visual content analysis [21] incorporating the three main stages of analysis including identification, coding, and analysis of the care maps.

Results

Phase 1: design and development

Twelve mothers and four fathers of CMC were recruited. All were fluent in English and 82% reported English as their primary language. Almost all caregivers (94%) reported being married or common law and had completed post-secondary or professional degrees (Table 1). Sixteen CTMs were recruited, including allied health professionals (69%), teachers (31%), NPs (26%), and physicians (12%) (Table 2). Clinical characteristics for CMC were collected to describe the population (Table 1). Caregivers (n = 16) and CTMs (n = 16) completed semi-structured qualitative interviews. Four themes were identified: (1) simplified snapshot, (2) envisioned use, (3) caregiver hesitancy, and (4) design modifications. In the quotes presented, “P” refers to a parental caregiver, and “CTM” denotes a care team member.

Table 1 Demographic characteristics of caregivers and CMC (Phases 1, 2, and 3)

Table 2 Demographic characteristics of CTM (Phases 1 and 3)

Simplified snapshot

Most caregivers and CTMs felt that care maps would be useful for providing a clear, visual summary of key aspects of the child’s care, such as resources, services, and providers. Many described the care map as a snapshot of the child and their life. Several CTMs and a few caregivers highlighted that the colour coordination of branches and bubbles effectively organized the care map, making it easier for CTMs to review aspects that were most relevant to their role.

“I like the care map in terms of having a quick snapshot of the big picture of him, his care, his life, and [as a] means of communication.” P3.

“I think a visual aid in any sense is a good thing to have…it just paints a picture literally in front of you, it’s definitely beneficial.” P5.

“Seeing the separation between school and different supports and other things with the colours is helpful. I like how the child’s picture and their name is at the centre, showing that they’re really the centre of everything, and how everybody else connects to them.” CTM3.

“I like the colour coding, it’s pretty straightforward…you focus on what’s interesting, what’s important to the kid, depending on what you’re supporting them with.” CTM8.

A few caregivers and CTMs compared the care map to a care plan [22], which is an executive medical summary developed by the Complex Care NP in consultation with the family. Caregivers and CTMs described the care map as less wordy and quicker to review. Caregivers commented on the value of both tools, with the choice depending on the type of information to be shared and the audience.

“[Compared to a care plan] it’s a more visual representation of all the wording…It shows the key stuff that you need to look at. if you need to delve more into the details then you can just go back to the care plan… anybody who’s doing the day-to-day care, would be looking at the yellow bubble [on the care map]…we’d give both of them to the care provider.” P6.

“People get lost, or they lose interest, or they don’t have time to go through all of [the care plan]…it goes over their heads, but most people…learn through visual context, so this [care map] that’s on the screen, it’s simple, it’s clear, and it’s colour-coordinated.” P7.

“A care plan itself has a lot of detail…it takes a lot of time to go through and get a picture of the child, but [the care map] is a very succinct picture of the child…It provides some nice context to who the child is, who the family is, what’s important to them…Anyone who sees that care map, you see the bigger picture and that’s always useful when you’re caring for a family.” CTM2.

One CTM was unsure if the care map would be more useful than the care plan for their own needs but believed it might be more meaningful for families, describing it as child-centered and less medically oriented.

Envisioned use

Several caregivers and CTMs viewed care maps as a valuable tool for organization, coordination, and communication, particularly to showcase the child’s life beyond medical care and the complexity of care.

“If [care providers] have a child with special needs and they see how complex the whole rest of their life is, outside of the school and outside of the hospital system, then people might be more understanding… it just makes things a little more real for people. It’s hard for them to understand what you’re going through, short of you sitting there, reporting, explaining it, right?” P7.

“I think people like seeing…these are goals for school…these things keep him mobile, keep him safe” P4.

“I think it would be incredibly useful for families to try to communicate their life. Our families already spend multiple hours a week doing coordination, making phone calls…I think this may help people understand.” CTM4.

Some CTMs discussed that care maps may include information they do not typically receive, offering a broader view of what’s important to the family and child and helping to inform care. One CTM suggested that reviewing the care map during appointments, procedures, or admissions could help communicate useful information to clinical teams, such as what makes the patient happy. A teacher mentioned that care maps could be especially useful when working with children who are non-verbal, offering insights into their lives outside school. A few CTMs said they would use the care map to review available resources with families, including financial and social support.

“Because [care maps are] developed by families, and, perhaps with the child’s input as well, I think it would provide us more insight into the family and the child’s overall care team. Sometimes it’s easy just to think of the medical team and school and home, but there’s so many other pieces that you’re able to really tell from the care map. The care map also includes some information that’s non-medical…that is really important to know but we may not necessarily touch on in a clinic visit. Sometimes it gives us an idea of what families’ priorities are.” CTM3.

“If I’m feeling the parents need something, I can refer them back [to the care map]… Let’s look at the Advocacy section, what family services do you have?…Knowing who the families have really helps us understand how they’re functioning as a family unit… I see how that would help me better understand my families.” CTM21.

Some caregivers considered sharing the care map with their child’s complex care team, school, nurses, respite providers, and family members, while others indicated that they would use it as a personal coordination resource or for therapeutic purposes. One caregiver felt that sharing the care map would help providers see her child as a person rather than just a number. A couple caregivers and CTMs mentioned that the care map would be particularly useful when meeting new care providers or new patients, respectively.

“I don’t think it’s a bad thing to give [the care map] to anybody within her care, not her main doctors, pediatricians, they know all these things…but nurses that haven’t met her before or even just to show family the things that are involved.” P5.

“I honestly don’t know if I would share [the care map] with anybody…I feel like it’s more therapeutic for me to look at it….this is our bubble and this is our life.” P3.

“I could see where it might have some usefulness if there is a change in anyone on his care team. As a,‘here’s what you need to know about me’ tool, in a different format.” P2.

Caregiver hesitancy

Three caregivers were hesitant about using care maps for different reasons, including a preference for the care plan, uncertainty about how to create one, and time constraints.

“I would probably be questioning myself a little bit…and it may take a while [to create a care map]…Having somebody that could say ‘put that there’ or…a resource to say [how I should do it].” P4.

“When I magically have time, maybe [I would create a care map]…this wouldn’t be my first priority. My first priority is making sure his medical documentation is…accurate. Then I might get to this.” P2.

Design modifications

Several caregivers and CTMs suggested design modifications to enhance the care map’s utility, including adding more branches and bubbles, and allowing users to click on bubbles to add more detail. CTMs wanted more information to better understand specific bubbles, while caregivers mostly sought a larger area to include contact information.

“If you were able to click on [the bubble] and it would have a list of the community supports that are involved, for example, I think that would be helpful….Like, Recreation, Walker Balls… if you could put more information in each one of these boxes that you could open and get a little bit more detail.” CTM7.

“If you click on each of these and there’s more information… Let’s say, for school, under occupational therapy, could be what they’re currently working on.” P1.

“If you need to contact the physician, you click on the name, contact information pops up, and you can call, especially on mobile, you just have the number right there and then you can follow through.” P6.

A few CTMs proposed customizing the sizes of the branches or bubbles to communicate their significance.

“I would be nice to be able to make some things stand out…Whether it’s size, or, highlighting a different colour…For some families, some of these are gonna be much bigger than others. You’ve got Legal on there… for some families, that’s gonna be really minimal. And for some families… if a child is in foster care… that might actually be really big.” CTM5.

Modifications to care map prototype

Caregiver and CTM suggestions from the qualitative interviews were quantified and prioritized to guide improvements to the care map prototype. Thirteen caregivers and CTMs (40%) requested the ability to click on the secondary bubbles to access more information. A free text option was added to each secondary bubble, allowing for a larger amount of text to be viewed when the bubble was clicked on. Three caregivers and CTMs (9%) requested incorporating additional branches and bubbles into the design. Four primary branches and three secondary bubbles were added, resulting in a total of 10 primary branches and 8 secondary bubbles. Due to budgetary constraints, we were unable to modify the design to allow customizable sizes of branches and bubbles, as requested by two CTMs. These modifications were incorporated into the online care map for Phase 2.

Phase 2: usability testing

Ten caregivers participated in usability testing. Demographics of the caregivers and clinical characteristics of the CMC are presented in Table 1. Five caregivers (50%) made one or more navigation error when completing the care map task (range = 1–3 errors, median = 2). Of these, three caregivers made errors trying to locate the edit function and two caregivers made errors trying to add a branch or bubble. One of these caregivers was unable to add the primary bubble and therefore did not complete the task. All other caregivers (n = 9) were able to successfully add a primary branch (‘Hospital’) and a secondary bubble (‘Dr. Doctor’). The time to complete the care map task ranged from 71 to 153 s (median = 99s).

Time and budgetary constraints limited the modifications that could be made to the care map for Phase 3. The findings of Phase 2 were used to guide the platform training for caregivers in Phase 3. The training included an explanation of what a care map is, along with a demonstration of how to edit and add to it. A care map ‘how to’ resource was also created and available on C2 to all registered users.

Phase 3: feasibility testing

In Phase 3, 39 caregivers (95%) consented to participate in the research study, 37 caregivers completed baseline questionnaires, and 36 registered on C2 (Table 1). Caregivers invited 116 CTMs to register on C2 and 90 CTMs completed the registration process. The median number of registered CTMs per caregiver was 4 (range: 1–12). Forty-two CTMs were recruited to participate in the study (Table 2).

Most caregivers reported having a computer at home and all had internet access. Similarly, most CTMs had access to a computer, either at work or at home, and to the internet. Both caregivers and CTMs expressed high levels of comfort with computers, smartphones/tablets, the internet, and social media (Table 3).

Table 3 Comfort with technology survey for caregivers and CTMs (Phase 3)

70% (25/36) of caregivers created a care map of varying detail and complexity. Of those who created a care map, 80% reported that they had used it, and 66% reported updating the care map at least once during the study. The remaining reported usage data from the care map usage survey is included in Table 4. CTMs (70%) and caregivers (83%) reported that they would continue to use the platform and its features. 57% of CTMs reported viewing the care map and 33% reported using it. CTMs did not report editing the care maps created by caregivers.

Table 4 Care map usage survey (Phase 3)

Descriptive visual content analysis of all care maps (n = 25) demonstrated ten main categories that were commonly included (Fig. 2). These categories varied in terms of frequency on care maps: Children’s Hospital/Main team (n = 25), School/Daycare (n = 25), Family and Friends (n = 24), Equipment/Supplies (n = 24), Community Medical/Developmental (n = 15), Home Care (n = 7), Goals (n = 4), What I Like (n = 3), Funding (n = 2) and Community/Foundation (n = 2).

Semi-structured qualitative interviews exploring care map creation and utility were completed with a subset of caregivers (n = 15) (who did n = 12/did not n = 3 create care maps) and a subset of CTMs (n = 13) to include diverse representations of thoughts and opinions. Four themes were identified: (1) care maps in clinical care, (2) enhanced understanding of the bigger picture, (3) uncertain value and redundancy, and (4) innovations for greater impact.

Care maps in clinical care

The use of the online care maps in clinical care offered novel insight into their application. Some caregivers and CTMs found them helpful for coordinating both hospital and community-based care by identifying provider roles and providing contact information. A few CTMs and caregivers noted the difficulty of finding contact information for providers and highlighted the benefit of having this information centrally located on the care map.

“I did really enjoy the care map… if I did forget somebody’s name or what service, I was able to quickly look up who they were, as well as being able to have some of the [rehabilitation centre] people on there. It helped bring everybody a little bit more organized in thought… It did give me that clarity and direction for who was involved, and how they were involved.” P19.

“It was nice to see everything on there and who does what… and then have all their info on there because right now I just have a bunch of business cards that I try and keep track of and look for numbers and emails.” P27. “I did [look at the care map] and that’s how I came to understand who was involved…for example, the [community] coordinator was involved with the patient…if I needed to communicate with that person, I knew exactly who to go to. The care map was actually quite useful.” CTM13.

“It was interesting to see how much communication or connections there were to the patient. You’d have the hospital aspect of all the staff that the patient sees, and then you‘d have the community staffing which is who we don’t typically communicate with but if we were to have to connect with them, we know their name.” CTM27.

Some CTMs and caregivers outlined that having a care map to review before providers meet with a child and their family can provide valuable information that helps guide the conversation, establish rapport, and identify care goals. A few CTMs mentioned that they would use the care map to identify gaps and overlaps in services and supports in the future, which would, in turn, help them better assist families.

“I was able to learn…more about the families and the extent of their involvement in the communities and then different supports that they have, as well as, the kind of extracurricular activities that they are involved with…that I might not have learned without seeing their care maps, because a lot of the communication that we have with families is usually really medically focused.” CTM3.

“One of the predictors of resiliency when I’m working with caregivers is to see, how many people and supports they have in their life, so if I clicked on [the care map]…and there was hardly any [bubbles] filled out, that would give me a perception…this is a family that might not have as many connections, there might be barriers to that. I’d need to explore that with the family and to work through that and to see if we can fill their map.” CTM26.

Enhanced understanding of the bigger picture

The primary reason that caregivers and CTMs reported using a care map was to visualize the bigger picture and portray information about the child beyond the tertiary hospital. A secondary concept was the insight provided by the care map, including an understanding of what is important to families. Several caregivers spoke positively about their experience creating a care map. Some caregivers commented that it provided a picture of the complexity of their child and was eye-opening to see the many aspects of care they manage.

“I actually really liked [the care map] because it was all about [child] and not quite so medical. It showed what a big circle of all that is going on in his life, rather than just all of his diagnoses… If you looked at [the care map] and saw all of the things he likes to do and enjoys, and all of his friends, you’d sort of get a bigger picture of [child] than his neurological impairments.” P22.

“People can get a bigger picture of what his interests are and who he is and not just the medical stuff…have a bit more of a consideration of globally what’s happening with the child… everything mapped out and the different aspects and everybody’s job all working towards [child]…it gave a little bit of perspective to everybody involved in his care.” P26.

“I mentioned [the care map] during our clinic visit and I was able to engage in a conversation with the child and the family around some of the activities that they participate in outside of the home… I think that was nice on both ends…they saw that I looked at the care map that probably took them a lot of time to create but also that they were able to share some of the activities that the child, the siblings, the family participates in, which is really nice to learn about.” CTM3.

The care map was described by caregivers and CTMs as a visual snapshot, a connection of the dots, and a who’s who that especially helped visualize everything in one place rather than having to look through multiple documents. Several CTMs expressed how the care maps helped them understand their own role in the child’s care and provided information about the many aspects of care that each family was coordinating.

“When I go to [hospital]…they probably don’t understand the scope of [care]…I didn’t even realize how many people are actually involved in my son’s care until [I] mapped it out….You get a snapshot of all that entails…which is neat and it’s well organized.” P7.

“I think it’s really neat to see the care map because I get bits and pieces at times and just to see it in one picture…how many people, how many things this family is juggling all at one time is huge.” CTM47.

CTMs also described that the care map changed their perception of the child and their family which was beneficial to understanding their unique situation. Teachers found value in seeing aspects of care outside of the school environment.

“It’s that optic of support [for caregivers] too, they’ve got their little village…[the care map] gives you the visual…who’s involved and what’s involved…I think it’s a good reminder for parents…and it just makes those of us who are part of the team appreciate the parents’ journey. Because it does give that visual representation.” CTM53.

Uncertain value and redundancy

While CTMs were nearly unanimous in liking the care map and finding it helpful, some caregivers either did not use the care map or did not find it beneficial. Caregivers shared that the main reason for this was uncertainty about its purpose or value, with many perceiving it exclusively as a contact map. Some caregivers did not purposefully share it with their child’s CTMs because they could not articulate why they would need to do so.

“I enjoyed creating it, it was interesting to see how many people are involved in her care. That was kind of fun to do but… there was really no use for it once it’s made… I didn’t really find the need to share it. I would share it if I thought somebody would be interested. I don’t think that any of the people in her groups would really have any benefit from seeing it.” P1.

“I didn’t use it because I didn’t get the sense of it…to whom would I show that map? What would I do with a map? I have made the map, these are the departments, these are the people involved in my child’s life but now what?” P14.

Some caregivers and CTMs felt that the care map was redundant to the care plan [22] or other documents.

“I don’t think [the care map] is necessary. I think if it’s written down [from the family], who’s involved in his care… I think that would be sufficient. I don’t think a diagram is necessary.” CTM42.

“I don’t think that I need the care maps as part of the platform… I think that for the other care providers that have a copy of his care plan, they can see who’s involved in his care, without it being in a weird, shaped map.” P47.

Innovations for greater impact

After using the care map in the child’s care, caregivers and CTMs had further suggestions to enhance its utility. A few caregivers and CTMs felt that integrating care maps into the existing electronic medical records (EMR) would increase accessibility and improve uptake. One CTM emphasized that if caregivers invested time in creating a care map, it was important for it to be readily available in the EMR and for CTMs to dedicate time to review it, adding that it can answer many questions that providers ask families.

“I think it’d be great if we could share it with the larger team… and somehow incorporated into the [EMR] system at [tertiary hospital]… That would be fantastic, cause then they’d understand the complexity that is [child]…it would just make things more personal… it would help prompt conversations that ordinarily wouldn’t be sparked.” P7.

Two caregivers suggested design modifications for the online care map. One recommended incorporating the option to add “emojis” or “images” of the child’s interest, such as Scooby Doo or Sesame Street, to personalize the care map. The other requested the addition of more secondary bubbles to represent larger teams and the ability to click on contacts within the care map to send secure messages.

Discussion

Care maps are a novel and emerging tool in the comprehensive care of CMC. To our knowledge, this is the first study to design, develop, and evaluate an online care map creation tool for caregivers and CTMs of CMC. Our findings demonstrate that caregivers actively created and disseminated online care maps. CTMs appreciatively used these to gain holistic information that they may not have known through traditional clinical documentation, which impacted care decisions. CTMs expressed how the care maps helped them understand their own role in the child’s care and provided insight into the many aspects of care each family coordinating. Involving caregivers and CTMs in the co-creation of the tool enabled the implementation of valuable design modifications that enhanced its utility. Our discussion will focus on the argument for care maps as a clinical tool for CMC and the utility and integration of an online care map.

Family caregivers of CMC face recurrent communication challenges with their child’s care team and have reported that their holistic perspective is not always recognized [23,24,25]. Care maps provide caregivers with a tool to amplify their voice and illustrate information about their child that spans beyond the medical realm [23]. The valuable information provided by care maps has the potential to enhance care delivery and clinical outcomes if effectively integrated into care planning discussions [7]. Currently, care maps are not routinely used or practically integrated into the clinical care for CMC [7]. The reason for this is likely multifactorial, including caregivers not understanding the value that care maps can hold for CTMs and the absence of standardization for creating and sharing care maps.

Integration of care maps into routine clinical care for CMC aligns with progressive care models, including authentic patient and family partnership [26] and patient and family-centered care (PFCC) [27]. Previous work by our group [3, 4, 7] demonstrates the utility of care maps in facilitating all domains of PFCC including respect, information sharing, participation, and collaboration. This study demonstrated that the effective creation and integration of care maps required dual participation from both caregivers and CTMs. Providing a platform for caregivers to share information and for CTMs to access it was essential. This kind of collaboration can help CTMs identify gaps and duplications in care and provide context as to where a CTM is situated in the care web. The care map is an illustration of the caregiver’s deeper understanding of the program of care they manage for their child, including the diversity of individuals involved. It serves as a tool to visualize and facilitate dialogue, promote collaboration between caregivers and CTMs, and ensure that the child and family remain at the center of care. At a systems level, organizations can continually strive to support and include families by communicating the value of creating care maps and encouraging caregiver participation. The goal is to partner with families to effectively coordinate and plan care.

An online tool for care map creation and sharing allows caregivers to be owners and editors of their child’s care map, with the ability to share the care map in real-time with multiple CTMs. Utilizing modern technology for care maps decreases the burden on caregivers [28,29,30], who would otherwise be tasked with creating a new care map as the child's needs and care team evolve. While traditional paper-based caregiver-created care maps allow for creation and self-expression, it also means that there is only one document and subsequently sharing with multiple providers can be a challenge. Information sharing between providers and caregivers should be seamless and make effective use of technology [30, 31] to support access to up-to-date information for both caregivers and CTMs. Subsequent research should address the integration of care maps into hospital and community EMRs. This would provide CTMs with immediate access to care maps, which could be used before or during a patient visit to gain a holistic understanding of the patient and family.

We have identified limitations in our study. Notably, its findings may not be generalizable to individuals who do not speak English or those from low socioeconomic backgrounds. All caregivers required access to the internet and a computer or smartphone to participate in the study. Alternative methods for delivering online care maps must be conceptualized to ensure equitable access for populations with limited access to electronic devices or lower levels of technology literacy. Additionally, the non-healthcare providers who participated in the study were primarily teachers and relatives, which may affect the generalizability of the care map experience. To address these concerns, further research with a larger and more diverse population of caregivers and CTMs is essential.

We conducted a single round of usability testing to gain preliminary insights and identify any obvious issues with the online care map. Additional usability testing with multiple iterations should be completed to refine the design and validate its effectiveness for a broader audience. Due to resource constraints, front-end analytics were not developed for the online care map; instead, a care map usage survey was used to assess reported use by caregivers and CTMs. Future research should incorporate front-end analytics to capture objective usage for online care maps.

Future research should assess the impact of online care maps on clinical outcomes, including care efficiency and appropriateness. It is essential to determine whether having a care map accessible in the EMR streamlines care and enhances efficiency, and to understand its influence on clinical decision-making. Additionally, exploring how online care maps with contact information for care team members across sectors influence communication is necessary. A formal evaluation should also be completed to assess how online care maps impact care coordination, such as by identifying duplications or gaps in services. Parental engagement and hesitancy regarding the use of care maps should be further explored to gain deeper insights into why care maps may or may not be used and to identify supports that could help overcome any barriers. The suggestions for future research would provide further insight into how to use online care maps in clinical care and the requirements for further online care map development.

Conclusion

An online care map creation tool was developed in collaboration with caregivers and CTMs for CMC. Caregivers and CTMs appreciated care maps as an organizational, coordination, and communication tool, offering an enhanced understanding of the complexity of care and a holistic view of the child. CTMs who used the care maps in clinical care found them valuable for centralizing information and guiding care discussions. Some caregivers chose not to use the care map due to a perceived lack of value or redundancy with existing documents. Both caregivers and CTMs recommended integrating the care map into the EMR to improve accessibility and uptake. Future research should explore integration into EMRs and care pathways and evaluate the impact on clinical outcomes.

Fig. 1

Sample Care Map

Fig. 2

Descriptive Visual Analysis of Care Maps