How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome

The challenges of caring for children with complex health needs, such as intellectual disability (ID) and autism spectrum disorder (ASD), are multiple and experienced by both caregivers and health professionals. Fragile X syndrome (FXS) is the most common single gene cause of ID and ASD, and provides a pertinent model to understand these complexities of care, as well as the communication challenges experienced between caregivers and healthcare professionals. In recent years both caregivers and healthcare professionals have recognized the need for enhancing communication both in clinical and research settings. Knowledge mapping has emerged as a tool to support quality communication between team participants. Here we review how differences in mental models, as well as challenges related to health literacy and knowledge transfer can have an impact on communication. Next, we present different knowledge mapping approaches used in complex situations, with a focus on concept maps and care maps. Finally, we highlight the potential benefits and limitations of mapping to improve communication issues related to caring for individuals with FXS and potentially other neurodevelopmental disorders (NDDs).

81 The Use of Online Care-Maps for Children with Medical Complexity

Primary Subject area Complex Care Background Children with medical complexity (CMC) are a highly medicalized population of children who require specialized care across various settings including the hospital, home and community, making care coordination challenging. Care-maps, a visual representation of the people and places involved in a patient’s care, are one such tool to facilitate care coordination (Figure 1). To date, care-maps have not yet been used in a clinical environment, examined in real time or used via a standardized approach. Objectives The aims of our study were to develop a shareable standardized online tool that supports the parental creation of a care-map, and to assess the utility of care-maps in clinical care from a parent, health care provider (HCP), and community perspective. Design/Methods Parents of CMC were invited to use a standardized online care platform called Connecting2gether for 6-months and create online care-maps that could be shared with their HCPs and other community members (i.e., teachers, secondary caregivers). Demographics and internet usage surveys were completed at baseline and an acceptability survey was completed at 6-months. Surveys were analyzed using descriptive methods and care-maps were analyzed via descriptive visual analysis. Results Thirty-seven parents enrolled on the platform and 25 (70%) created a care-map and used it for the duration of the study. Of the 25, 14 (66%) went back and made revisions and 17 (80%) reported using it in clinic, home or school. Visual analysis demonstrated 11 categories (bubbles) that were commonly included. All care-maps included a Medical Team, School/Daycare and Family and Friends category, which automatically populated. The majority of care-maps included a central child bubble with the child’s photo (92%), and Community Medical Services (i.e. rehab centers) (60%). Less frequent categories included Home Care (28%), Goals (16%), and 12% included What I Like, Funding, and Community/Foundation individual bubbles. Some parents reported initial uncertainty, but at end-of-study, some reported care-maps as the most useful feature of the platform. Fifty seven percent (12/23) of HCPs viewed the created care-map and only 20% used it in the child’s care. The majority (83%) of HCPs specifically valued seeing the big picture of the child’s care, found it easy to navigate and the detail it provided. Conclusion The ability of care-maps to illustrate the intricate web of medical and non-medical care supporting CMCs in their daily life provides insight and value for parents, HCPs and non-HCPs. Care-maps were found to be valuable from the perspective of HCPs. Parents reported initial uncertainty, highlighting the importance of the HCP promoting the use of care-maps with their patients and families.

Home respiratory rehabilitation: a purposes literature review focusing on the clinical pathway management

Clinical Care pathways, also known as critical pathways, integrated care pathways, case management plans, clinical care pathways or care maps, are used to systematically plan and follow up a patient focused care program. Clinical pathways are used all over the world and so for respiratory rehabilitation pathways (RR) and the importance of knowledge and learning Evidence Based Practice (EBP) is well known and mandatory. However, the EBP acquisitions of the home RR model and the knowledge of Clinical Care Pathways (PCA) are poorly defined.

Exploring the value of social network ‘care maps’ in the provision of long-term conditions care

Objectives There is renewed attention to the role of social networks as part of person-centred long-term conditions care. We sought to explore the benefits of ‘care maps’ – a patient-identified social network map of their care community – for health professionals in providing person-centred care. Methods We piloted care maps with 39 patients with long-term conditions in three urban and one rural general practice and two hospital wards. We interviewed the health professionals (n = 39) of these patients about what value, if any, care maps added to patient care. We analysed health professional interview data using thematic analysis to identify common themes. Results Health professionals all said they learned about their patients as a person-in-context. There was an increased understanding of patients’ support networks, synthesising what is known and unknown. Health professionals understood patients’ perceptions of health professionals and what really mattered to patients. There was discussion about the therapeutic value of care maps. The maps prompted reflection on practice. Discussion Care maps facilitated a broader focus than the clinical presentation. Using care maps may enable health professionals to support self-management rather than feeling responsible for many aspects of care. Care maps had ‘social function’ for health professionals. They may be a valuable tool for patients and clinicians to bridge the gap between medical treatment and patients’ lifeworlds.

Humble But Powerful: The Role of “Access to Information & Knowledge” in Implementation Success in the RE-INSPIRE Study

Background and Hypothesis: This study examines the role access to information and knowledge in acute stroke care following a 2011 stroke quality improvement clustered randomized trial and a national acute ischemic stroke (AIS) directive in the Veterans Health Administration. Access to information is associated with the highest levels of acute stroke care provision, as well as other key organizational features. Experimental Design or Project Methods: A multidisciplinary team analyzed and conducted semistructured interviews of clinical providers across 11 VAMCs over a 3-year period. The interviews were then coded and analyzed using a mix methods approach. This study focused on the “Access to Information and Knowledge” organization feature defined in the Consolidated Framework for Implementation Research constructs. Results: The manifestations of this organizational feature include: stroke binders, intranet share-points, pocket cards, algorithms, checklists, templates, stroke kits, flow sheets, care maps, posters, and room signs. Acute stroke is a low-volume, high stakes, time sensitive condition at these sites. Therefore, proper access to information is especially important to ensure a continuity of care that transcends the idiosyncrasies of individual providers allowing for quick, correct, and complete care of the patient. Conclusion and Potential Impact: The mere presence of certain tools in a clinical setting is not enough, but rather the feature relies on getting the right information, to the right people, at the right time. Access to information exemplifies the need for implementation science, and insights from this study can be broadly applied to a plethora of scenarios in other clinical settings.

Neurological Diseases and Pregnancy

This book is intended for practitioners in the field of neurology, maternal fetal medicine, and obstetrics and gynecology. It is comprehensive in that it covers most neurological diseases, issues related to delivery and postpartum, use of neurological drugs during pregnancy, and prepregnancy counseling and planning. Care maps in each chapter are focused on specific issues relating to each neurological disease and their management. The authors list includes experts in the field of maternal fetal medicine, neurology, obstetrics and gynecology, and lactation.

General Approach to Pregnancy Care in the Neurologic Patient

Caring for the obstetric patient with significant medical problems can be complex. Neurologic diseases in pregnancy can range in severity and therefore vary in the amount of care planning that is required. Certain diseases will require more coordination of care with multidisciplinary teams than others. In these cases, the use of care maps or guidelines can assist practitioners with providing comprehensive care. This chapter will serve as an overview of pregnancy-specific considerations that will be reviewed in subsequent chapters throughout this book. Overall, by focusing attention to the specific needs of the complex obstetric neurologic patient, practitioners can help to optimize outcomes for these women and their pregnancies.