Caregivers' Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis.

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.

Evaluation of a Secure Messaging System in the Care of Children With Medical Complexity: Mixed Methods Study.

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.

From Philanthropy to Clinical Care through Research: Impact of the Norman Saunders Complex Care Initiative.

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.

Care maps: De-medicalizing children with medical complexity.

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.

Objective Sleep Characteristics and Factors Associated With Sleep Duration and Waking During Pediatric Hospitalization.

Importance: 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. Objective: To determine sleep quantity and patterns in hospitalized children and determine factors associated with sleep quantity and nighttime waking for children in hospital. Design, Setting, and Participants: 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. Main Outcomes and Measures: 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. Results: 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). Conclusions and Relevance: 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.

Perspectives on team communication challenges in caring for children with medical complexity.

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.

The parental experience and perceptions of blenderized tube feeding for children with medical complexity.

OBJECTIVES: Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents' experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent's perspective. METHODS: This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child's diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews. RESULTS: Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child's health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet. CONCLUSION: BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity.

An implementation model for managing cloud-based longitudinal care plans for children with medical complexity.

OBJECTIVE: We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC). MATERIALS AND METHODS: We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed. Between sessions, we reviewed audio recordings to identify strategies that would mitigate barriers that participants reported relating to 4 processes for managing LCPs: (1) taking ownership, (2) sharing, (3) reviewing, and (4) editing. Analysis informed iterative implementation model revisions. RESULTS: We conducted 30 design sessions, with 10 caregivers and 20 providers. Participants emphasized that cloud-based LCPs required a team of owners: the caregiver(s), a caregiver-designated clinician, and a care coordinator. Permission settings would need to include universal accessibility for emergency providers, team-level permission options, and some editing restrictions for caregivers. Notifications to review and edit the LCP should be sent to team members before and after clinic visits and after hospital encounters. Mitigating double documentation barriers would require alignment of data fields between the LCP and electronic health record to maximize interoperability. DISCUSSION: These findings provide a model for how we may leverage emerging Health Insurance Portability and Accountability Act-compliant cloud computing technologies to support families and providers in comanaging health information for CMC. CONCLUSIONS: Utilizing these management strategies when implementing cloud-based LCPs has the potential to improve team-based care across settings.

User-centered design of a longitudinal care plan for children with medical complexity.

OBJECTIVE: To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings. MATERIALS AND METHODS: We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions. RESULTS: We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology. DISCUSSION: Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience. CONCLUSION: Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.

Toward an Understanding of Advance Care Planning in Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

Care maps and care plans for children with medical complexity.

INTRODUCTION: The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). METHOD: This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. RESULTS: Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps. DISCUSSION: Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.

Development of the Pediatric Social Risk Instrument Using a Structured Panel Approach.

BACKGROUND: Social determinants of health impact child illness. Currently, no instrument exists to identify social need during hospital admission. METHODS: Using the UCLA (University of California Los Angeles)-RAND appropriateness method, consensus was reached for an instrument to identify social need in hospitalized children. A panel of 11 experts reviewed candidate indicators through 3 rounds to reach consensus. The instrument then underwent usability testing. RESULTS: Three hundred and forty-seven indicators from the literature were sorted into 18 social risk themes. After 3 rounds, consensus was reached on 82 indicators. Six additional social risk themes were recommended by the panel, resulting in consensus for 18 additional indicators. Final refinement resulted in an instrument containing 86 indicators representing 11 social risk themes. Usability testing identified that the tool was well received by families. Final feedback was incorporated into a post-usability instrument. CONCLUSIONS: Using the UCLA-RAND appropriateness method, a new pediatric social risk instrument was created to identify social need for hospitalized children.

Care maps for children with medical complexity.

AIM: Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use. METHOD: Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach. RESULTS: Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work. INTERPRETATION: Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward. WHAT THIS PAPER ADDS: Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.

Nurses' views of factors affecting sleep for hospitalized children and their families: A focus group study.

Light, noise, and interruptions from hospital staff lead to frequent awakenings and detrimental changes to sleep quantity and quality for children who are hospitalized and their parents who stay with them overnight. An understanding of nurses' views on how care affects sleep for the hospitalized child and parent is crucial to the development of strategies to decrease sleep disturbance in hospital. The purpose of this descriptive qualitative study was to gain an understanding of nurses' views on their role in and influence on sleep for families; perceived barriers and facilitators of patient and parent sleep at night; strategies nurses use to preserve sleep; the distribution, between parent and nurse, of care for the child at night; views of the parent as a recipient of nursing care at night; and the nature of interactions between nurses and families at night. Thirty registered nurses from general pediatric and critical care units participated in one of four semi-structured focus groups. Four main influences on sleep were identified: child factors; environmental factors; nurse-parent interaction factors; and nursing care factors. Some of these restricted nurses' ability to optimize sleep, but many factors were amenable to intervention. Balancing strategies to preserve sleep with the provision of nursing assessment and intervention was challenging and complicated by the difficult nature of work outside of usual waking hours. Nurses highlighted the need for formal policy and mentoring related to provision of nursing care at night in pediatric settings.

A qualitative analysis of information sharing for children with medical complexity within and across health care organizations.

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.

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study.

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.

Using a novel patient medication list for ambulatory pediatric patients within a hospital-based complex care program.

BACKGROUND: Medication errors are common in the pediatric outpatient setting, and children with multiple prescriptions are at increased risk. Little is known about medication reconciliation's application in the ambulatory setting. Caregivers' perceptions of a patient medication list (PML), created for children with complex health needs, were assessed. METHODS: Caregivers of children followed by a tertiary care hospital ambulatory complex care program from February through December 2009 were enrolled in the study. An electronic PML software was nested within a clinical database. At the clinic visit, the medications were updated in the database by a nurse practitioner, and a PML was created and printed for the caregivers. Caregivers were asked to complete a pre-questionnaire before using the PML and a post-questionnaire 12 weeks later. RESULTS: The pre-questionnaire demonstrated that 19 (68%) of 28 caregivers expected the PML to be very helpful. After a mean of 19.3 weeks, on the post-questionnaire, 14 (50%) of the 28 caregivers reported that the PML was very helpful, 10 (40%) of 25 caregivers used the PML at every follow-up clinic visit, and 18 (67%) of 27 caregivers were satisfied with the PML. Five (18%) of 28 caregivers strongly agreed that the PML increased their knowledge of the child's medications, and 3 (11%) of 28 caregivers strongly agreed that the PML helped them remember to give the child's medications at home. CONCLUSIONS: A subset of caregivers in a complex care program reported that a PML was helpful during interactions with their medical team. Yet in general, caregivers did not find the PML helpful in increasing their medication knowledge or reminding them to administer their child's medications.

A home for medically complex children: the role of hospital programs.

The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.