Sherri Adams

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. 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. 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. 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.

Introduction Children with medical complexity (CMC) have chronic, intensive care needs managed by many healthcare practitioners. Medical advances have enabled CMC to survive well into adulthood. However, the availability of supports as CMC transition into the adult care system remain suboptimal, contributing to poor care coordination, and discontinuity. Promoting Intensive Transitions for Children and Youth with Medical Complexity from Paediatric to Adult Care (PITCare) aims to assess whether intensive patient and caregiver-oriented transition support beyond age 18 will improve continuity of care for CMC compared with usual care. Methods and analysis This is a pragmatic superiority randomised controlled trial in a parallel group, two-arm design with an embedded qualitative component. CMC turning 17.5 years old will be recruited (n=154), along with their primary caregiver. Participants randomised to the intervention arm will be provided with access to a multidisciplinary transition team who will support patients and caregivers in care planning, integration with an adult primary care provider (PCP), adult subspecialty facilitation and facilitation of resource supports for 2 years. Outcomes will be measured at baseline, 12 and 24 months. The primary outcome measure is successful transfer completion, defined as continuous care in the 2 years after age 18 years old. Secondary outcomes include satisfaction with transitional care, self-management, care coordination, healthcare service use, caregiver fatigue, family distress, utility and cost-effectiveness. Qualitative interviews will be conducted to explore the experiences of patients, caregivers, the transition team, and healthcare providers with the PITCare intervention. Ethics and dissemination Institutional approval was obtained from the Hospital for Sick Children Research Ethics Board. Our findings and resources will be shared with child health policymakers and transitions advocacy groups provincially, nationally, and internationally. Trial registration number ClinicalTrials.gov, US National Library of Medicine, National Institutes of Health, #NCT06093386.

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 of an online care map, and 2) explore its usability and feasibility from multiple perspectives.Methods This mixed methods study utilized an explanatory sequential design. In Phase 1 (Design and Development), the design features for an online care map were identified through semi-structured interviews with caregivers and CTMs. An online care map creation tool, housed within an online patient-facing platform, was created. In Phase 2 (Feasibility Testing), caregivers created, updated, and shared online care maps with CTMs. A usage survey and descriptive visual content analysis of the care maps was completed. Semi-structured interviews with caregivers and CTMs were conducted to explore the usability and feasibility of the online care maps.Results In Phase 1, interviews were conducted with caregivers (n = 16) and CTMs (n = 16). Three primary themes related to the design requirements were identified: 1) useful features, 2) suggestions, and 3) future use. In Phase 2, thirty-six caregivers registered on the online platform, with 70% (n = 25) creating a care map. Semi-structured interview data with caregivers (n = 15) and CTMs (n = 13) generated four primary themes: 1) clinical usage, 2) benefits, 3) challenges, and 4) suggestions to improve usability.Conclusion The development of a co-designed online care map tool was shown to be usable and feasible. Caregivers expressed how the care maps provided a holistic picture of their child and CTM’s described an enhanced ability to provide clinical care as it provided information that could have great impact on care decisions. Caregivers and CTMs desired that it be accessible in the EMR for easy distribution and access. Opportunities exist to explore integration into mainstream electronic medical records and pathways for care.

Background: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. Objective: This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. Methods: Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2’s features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. Results: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. Conclusions: Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.

Background: The Connecting2gether (C2) platform is a web and mobile–based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child’s care team members (CTMs) in a timely manner. Objective: The objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs’ and CTMs’ perceptions and experiences using secure messaging as a method of communication. Methods: This is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child’s care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis. Results: A total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child’s life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use. Conclusions: Overall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child’s health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging.

BACKGROUND Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. OBJECTIVE This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. METHODS Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2’s features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. RESULTS A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. CONCLUSIONS Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.

Children with medical complexity (CMC) require care coordination across hospital, home, and community settings. The use of a medical care plan supports care coordination; however, the content of the care plan is often controlled by the health care team, limiting the ability of parents to edit in real time. It has been suggested that these limitations could be improved by using online care plans shared between parents of CMC and care team members (CTM). The objective of this study was to explore the perspectives of parents and care team members of children with medical complexity following the use of an online care plan. This qualitative study utilized grounded theory (GT) to explore parent and CTM experiences using an online editable medical care plan. Parents of CMC were invited to use a novel online patient-facing platform to coordinate their child’s care and edit/share their child’s care plan. They were also able to invite any of their child’s CTM to use the platform. Parents could make changes to the care plan including adding, editing, or deleting information. After 6 months, parents and CTM participated in semi-structured interviews aimed at exploring their experiences using the online care plan. Consistent with GT, constant comparative analysis was used as data analysis occurred concurrently with interviews, which allowed for theoretical sampling and theory generation. Thirty-five semi-structured interviews with parents (n=15) and CTM (n=20) were conducted. Interviews revealed three major themes (9 sub-themes): 1) navigation of uncharted roles (trust, role sharing, responsibility), 2) requirements for success (collaborative review, electronic medical record integration, online access), and 3) cohesive care (autonomy, accessibility and convenience, same page). These themes informed the creation of a theory outlining how and why a robust online shared care plan can improve care for CMC. Both parents and CTM identified the uniqueness of this care plan located on the online platform as it promoted collaboration and trust whilst allowing for increased autonomy and convenience. Online shared care plans, implemented in a safe and thoughtful manner, promote cohesive partnering between parents and care team members while allowing easy access to information. This facilitates care coordination and a cohesive partnering between parents and care team members involved in the care of CMC.

The Connecting2gether (C2) platform is a secure online information-sharing tool that aims to improve care for children with medical complexity (CMC) and their families. A key feature of C2 is secure messaging which enables parents to communicate with their child’s care team members (CTMs) in a timely manner. (1) Evaluate the use of a secure messaging system, (2) Examine and compare the content of messages to email and phone calls, and (3) Explore parent and CTMs’ perceptions and experience using secure messaging as a method of communication. This study is a sub-study of a larger feasibility evaluation of the C2 platform. Parents of CMC were recruited from a tertiary level complex care program to use the C2 platform for 6 months. Parents could invite CTMs involved in their child’s care to register on the platform. Secure messages were extracted from C2 usage reports, and phone and email documentation from the electronic medical record. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Messaging content codes were iteratively developed through review of the C2 messages. Semi-structured interviews were completed with parents and CTMs. Communication and interview data were analyzed using thematic analysis. 36 parents and 43 care team members, including HCPs and family members, registered on the C2 platform. Participants sent a total of 1853 messages on C2 with parents and nurse practitioners sending a mean of 33.1 and 87.4 messages, respectively. 85.5% of all C2 messages were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on education, proactive check-ins, and non-medical aspects of the child’s life (Figure 1). Four themes emerged from the participant interviews related to C2 messaging: Connection to Care Team, Efficient Communication, Clinical Uses of Secure Messaging, and Barriers to Use (Figure 2). Overall, our study provides valuable insight into the benefits of secure messaging in the care of CMC. Secure messaging provided the opportunity for continued patient education, proactive check-ins from HCPs, and casual conversations about family and child life, which contributed to parents feeling an improved sense of connection with their child’s health care team. Secure messaging can be a beneficial additional communication method to improve communication between parents and their care team, reduce the associated burden of care coordination, and ultimately, improve the experience of care delivery.

Given the nature of their child’s underlying condition, parents of children with medical complexity (CMC) are relied upon to act as the primary care coordinator for their child. Tools like a care map have been shown to be effective in supporting patients and families, however, the use of an online care map that can be edited in real time has not been used and evaluated. The aims of this study were to: 1) determine the requirements and design features of a co-created online platform supporting care map creation, 2) use the platform for the development of a shareable standardized parent created care map, and 3) explore the utility and feasibility of an online care map from multiple perspectives including (i) parents, (ii) health care providers (HCPs), and (iii) non-HCPs. This qualitative study utilized interpretive description. Purposive sampling guided participant selection. In phase 1, the requirements and design features for a care map creation tool situated in an online patient and family facing platform were identified through semi-structured interviews with parents and HCPs/non-HCPs of CMC. This data was used to co-create the care map feature. In phase 2, parents used this online platform to create, update, and share care maps. Semi-structured interviews with parents and HCPs/non-HCPs of CMC were conducted to explore care map creation and utility. In phase 1, thirty-two interviews with parents (n=16) and HCPs/non-HCPs (n=16) were conducted. Four primary themes related to the requirements and design features for an online care map were identified and included: 1) useful features, 2) suggestions, 3) sharing, and 4) future use, which informed development of the online tool. In phase 2, thirty-six parents were on boarded to the online platform with n=25 (69%) choosing to create a care map. Semi-structured interview data with parents (n=15) and HCPs/non-HCPs (n=13) demonstrated four primary themes to inform the future use of online care maps: 1) clinical usage of care maps, 2) benefits of use, 3) challenges for usage, and 4) suggestions to improve usability. Parents have valuable feedback informing the co-creation of an online platform to create and share care maps. Parents reported uncertainty in the clinical usage of care maps, however, HCPs found them very informative. Further research is needed to understand the importance of education and clarity of roles in the use of a care map for clinical care of CMC.