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Background Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs – hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care. Methods This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis. Results Thirty-two individual interviews were conducted involving parents ( n  = 16) and care team members ( n  = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care). Conclusion Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.

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 The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC). Methods This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data. Results A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC. Conclusions Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.

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. 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. 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. 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. 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.

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. 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. 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. 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. 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.

Norman Saunders was a respected academic community paediatrician who was passionate about the care of children with medical complexity. Following his untimely death at age 60, patients, friends, and colleagues raised funds to create the Norman Saunders Complex Care Initiative (NSCCI). Dr. Saunders’s vision was a comprehensive, coordinated, and integrated clinical program for children with medical complexity that was informed by research evidence. The objective of this review was to evaluate the impact of targeted philanthropic funding on research, clinical care, and policy. Since 2006, NSCCI funds have been used to support interdisciplinary and innovative research. Funded projects have reflected a breadth of research questions (clinical care, training, health system delivery, social determinants), disciplines, and methods, and the research results have informed and helped build an internationally renowned clinical program in complex care. Philanthropic funding was the foundation for the NSCCI, which over the last 15 years has built research and clinical capacity, catalysed clinical and research networks, helped train paediatric residents, influenced policy, and improved the health and well-being of children with medical complexity and their families across Canada, and beyond.

Abstract Children with medical complexity (CMC) have extremely high health care needs. Given their chronic complex diagnoses and involvement of multiple care providers, they are often over medicalized and seen as a list of diagnoses rather than as a child. Parents of CMC are extraordinary caregivers and advocates for their children. Parental values and perspectives are critical drivers of medical decision making, therefore highlighting the importance of collaboration between all members of the medical team. For health care providers (HCPs) to holistically guide and support families, an all encompassing, big picture understanding of CMC and their family is needed, and care maps are one such vehicle to provide this insight. Care maps are a parent-created tool that can be used to provide a holistic view of the child and demonstrate the complexity of life and interrelatedness of services for CMC. Previous research has shown that care maps have been used as a resource to promote parental reflection and identify parental priorities of care. Promotion of care maps by HCPs as a valuable tool in understanding the child and family’s goals may help improve holistic understanding and promote collaborative care. Video Abstract 10.1093/pch/pxac044_video1 Video Abstract pxac044_video1 6317796592112

Abstract Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our goal was to improve transition readiness in children with medical complexity using a transition intervention within a Complex Care program. All children with medical complexity aged 14 to 18 were included in this quality improvement (QI) project (n = 54). We conducted a pre- and post-intervention chart review to assess transition outcomes and implemented a transition intervention for 6 months, which included an age-stratified checklist, charting template, and transition rounds. Before the intervention, 72% of 17- to 18-year-old patients had documented transition discussions, which increased to 86%. Patients with a family physician increased as well (61% to 73% for 17- to 18-year-olds). Three transition education rounds were held. The intervention increased transition readiness, provided tools to facilitate transition, and created a forum for conversation.

Children's sleep may be affected by hospitalization, yet few objective determinations of sleep patterns are reported for children in intensive care or general medicine units. There is limited research on relationships between sleep in hospital and child (eg, age, pain), treatment (eg, medications, nurse presence), or environmental (eg, noise, light, type of unit) factors. To determine sleep quantity and patterns in hospitalized children and determine factors associated with sleep quantity and nighttime waking for children in hospital. This was a prospective cross-sectional study of children admitted to a general pediatric unit or a pediatric intensive care unit at a pediatric quaternary teaching hospital in Toronto, Ontario, Canada, from October 2007 to July 2008. Participants included children aged 1 to 18 years who were expected to stay in hospital for at least 2 nights. Demographic data, information about the hospital stay and illness, and usual sleep habits were collected. Children wore an actigraph for 1 to 3 consecutive days and nights and completed a sleep diary. Sound and light meters were placed at the bedside. Data analyses took place in April 2009. The primary outcome was the mean number of minutes of child nighttime sleep from 7:30 pm to 7:29 am. Sleep variables were averaged over days and nights recorded (mean [SD] days and nights of wear, 2.54 [0.71]) and examined for associations with sleep quantity and patterns, as well as hazard of waking in the night. Of 124 eligible children approached for inclusion, 69 children consented (35 [51%] female; 20 [29%] aged 1-3 years, 10 [14%] aged 4-7 years, 17 [24%] aged 8-12 years, and 22 [32%] aged 13-18 years; 58 [84%] in the general pediatric unit). Children aged 1 to 3, 4 to 7, 8 to 12, and 13 to 18 years obtained a mean (SD) of 444 (132), 475 (86), 436 (114), and 384 (83) minutes of nighttime sleep, respectively; mean (SD) number of night awakenings was 14 (3), 18 (3), 14 (8), and 12 (6), respectively. Children on general pediatric units slept 258 minutes more per night than children sleeping in the pediatric intensive care unit (95% CI, 165.16-350.56 minutes; P < .001), children admitted for planned surgery slept 123 minutes more than children admitted for exacerbations of chronic illness (95% CI, 49.23-196.01 minutes; P < .01), and children sleeping in rooms with other patients slept 141 minutes fewer than children in private rooms (95% CI, -253.51 to -28.35 minutes; P = .01). Sound events greater than 80 dB were significantly associated with increased risk of instantaneous waking (hazard ratio [HR], 1.35; 95% CI, 1.02-1.80; P = .04), as were light events greater than 150 lux (HR, 1.17; 95% CI, 1.01-1.36; P = .03), receiving a medication that promoted sleep (HR, 1.04; 95% CI, 1.00-1.08; P = .03), and having a nurse in the room for most or all of the night (HR, 1.08; 95% CI, 1.03-1.13; P = .003). Sleeping on the general pediatrics unit was significantly associated with decreased risk of instantaneous waking (HR, 0.81; 95% CI, 0.77-0.85; P < .001), as was being admitted for planned surgery (HR, 0.95; 95% CI, 0.91-0.99; P = .04), receiving a medication that promoted wakefulness (HR, 0.96; 95% CI, 0.93-0.995; P = .02), and sharing a room with another patient (HR, 0.78; 95% CI, 0.72-0.84; P < .001). In this cross-sectional study of hospitalized children, children experienced considerable nighttime waking and sleep restriction to levels below national clinical recommendations at a time when they most needed the benefits of sleep. Given light and noise were the greatest contributors to nighttime waking in hospital, clinicians, administrators and hospital design experts should work together for solutions.

Background Children with medical complexity (CMC) are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and high health care use. Information exchange is critically important in high quality care of complex patients at high risk for poor care coordination. Written care plans for CMC are an excellent test case for how well information sharing is currently occurring. The purpose of this study was to identify the barriers to and facilitators of information sharing for CMC across providers, care settings, and families. Methods A qualitative study design with data analysis informed by a grounded theory approach was utilized. Two independent coders conducted secondary analysis of interviews with parents of CMC and health care professionals involved in the care of CMC, collected from two studies of healthcare service delivery for this population. Additional interviews were conducted with privacy officers of associated organizations to supplement these data. Emerging themes related to barriers and facilitators to information sharing were identified by the two coders and the research team, and a theory of facilitators and barriers to information exchange evolved. Results Barriers to information sharing were related to one of three major themes; 1) the lack of an integrated, accessible, secure platform on which summative health care information is stored, 2) fragmentation of the current health system, and 3) the lack of consistent policies, standards, and organizational priorities across organizations for information sharing. Facilitators of information sharing were related to improving accessibility to a common document, expanding the use of technology, and improving upon a structured communication plan. Conclusions Findings informed a model of how various barriers to information sharing interact to prevent optimal information sharing both within and across organizations and how the use of technology to improve communication and access to information can act as a solution.