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

2020 ◽  
Vol 27 (12) ◽  
pp. 1860-1870
Author(s):  
Arti D Desai ◽  
Grace Wang ◽  
Julia Wignall ◽  
Dylan Kinard ◽  
Vidhi Singh ◽  
...  
Keyword(s):  
Acute Care ◽  
Information Needs ◽  
Healthcare Providers ◽  
Care Plan ◽  
User Centered Design ◽  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Care Coordinators ◽  
Acute Care Settings ◽  
Design Preferences

Abstract 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.

scholarly journals Communication Challenges Faced by Spanish-Speaking Caregivers of Children with Medical Complexity

2020 ◽  
Author(s):  
Savithri Nageswaran ◽  
Margaret Ellis ◽  
Mark Stockton Beveridge
Keyword(s):  
Care Coordination ◽  
Healthcare Providers ◽  
Healthcare Services ◽  
Access To Healthcare ◽  
Children With Medical Complexity ◽  
Spanish Speaking ◽  
Medical Complexity ◽  
Communication Challenges ◽  
Care Coordinators ◽  
Observation Period

Abstract Background: Children with medical complexity (CMC) are at increased risk of fragmented care. Communication between caregivers and healthcare providers is important in the delivery of high-quality healthcare for children with medical complexity (CMC). Latino CMC face greater challenges in access to healthcare services. Hispanic children face greater challenges in access to healthcare services. Our objective was to describe the communication challenges faced by Spanish-speaking parents/caregivers of CMC. Methods: This was a retrospective cohort study of 70 CMC enrolled in a complex care program of a tertiary care children’s hospital in western North Carolina. We reviewed the care coordination tasks from encounter logs maintained by the program’s two bilingual care coordinators for a median observation period of 45 months. Data were then validated by the care coordinators. Data containing care coordination tasks were entered into ATLAS.ti and coded. Qualitative data analysis was performed. Using thematic content analysis and an iterative process, we identified recurrent themes related to communication challenges of Spanish-speaking caregivers. Results: Median age of children was 5 years; 51% were girls; 97% had Medicaid; and 3% were uninsured. Seven children died during the observation period. Three major themes were identified: 1) Spanish-speaking caregivers faced many communication challenges primarily because of language barrier. 2) Multiple factors at caregiver-, provider-, and system-levels, in addition to language barrier, contributed to communication challenges. 3) Communication challenges had serious consequences for CMC. These consequences were lessened by bilingual care coordinators.Conclusion: Spanish-speaking caregivers of CMC face unique communication challenges resulting in negative impact on the healthcare of these children. Bilingual care coordinators can help improve communication between Spanish-speaking caregivers of CMC and their healthcare providers. Interventions to address communication challenges of Spanish-speaking caregivers are warranted.

scholarly journals VP199 Limitations Of Studies On Oxygen Therapy In Acute Care Settings

2017 ◽  
Vol 33 (S1) ◽  
pp. 242-243
Author(s):  
Carmen Moga ◽  
Dagmara Chojecki
Keyword(s):  
Acute Care ◽  
Oxygen Therapy ◽  
A Priori ◽  
Healthcare Providers ◽  
Rapid Review ◽  
General Tendency ◽  
Qualitative Synthesis ◽  
Design Data ◽  
Safety Issues ◽  
Acute Care Settings

INTRODUCTION:A high-level, rapid review (1) was conducted on oxygen therapy issues studied in the past 10 years in acute care settings. The main objective was to determine the appropriateness/inappropriateness of use, safety issues, and quality of care associated with oxygen prescription, administration, and monitoring. The results from this review were used to inform an upcoming provincial oxygen summit.METHODS:The Health Technology Assessment review (1) used a standardized rapid review approach: a comprehensive search of literature (published in English from 2005 to 2016), study selection using a priori developed criteria, and a qualitative synthesis of the results. Iterative interactions with the requester were necessary to clarify and refine the research questions, scope, and inclusion criteria.RESULTS:Twenty-four audit studies were reviewed, the majority published after 2011, in the United Kingdom, and also in single institutions. Twelve studies reported effects after implementing interventions for improvement of oxygen prescription. Many studies had caveats on design, data reporting, and outcomes, or they lacked an explanation of the methods of analysis. Studies conducted in rural settings, and on infants and children were unavailable. The reported issues with oxygen therapy included: a lack or an inconsistency of compliance with guidelines, local policies, and standards; inappropriate prescription and administration; variability in practice among healthcare providers; and suboptimal monitoring, including poor standards of medical chart documentation for patients receiving oxygen therapy, such as incomplete details on flow rate and oxygen concentration.CONCLUSIONS:Possibly due to the general tendency to publish research findings that have statistically significant results, relatively few publications were found in the literature search. The universal use of oxygen therapy and the enrolment of consecutive patients in some of the studies increase the applicability of the findings to other institutions. The rapid review provided a timely synthesis of the available, credible research for use by local stakeholders for further discussions and planning.

128 Evaluation of a Secure Messaging System for Children with Medical Complexity

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e90-e92
Author(s):  
Camilla Parpia ◽  
Susan Miranda ◽  
Madison Beatty ◽  
Clara Moore ◽  
Sherri Adams ◽  
...  
Keyword(s):  
Clinical Care ◽  
Healthcare Providers ◽  
Care Program ◽  
Online Information ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Secure Messaging ◽  
Personal Support ◽  
Phone Calls ◽  
Medical Complexity

Abstract Primary Subject area Complex Care Background 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 that enables parents to communicate with their child’s healthcare providers (HCPs) in an easy and timely manner. Objectives The objectives of this project are to (1) describe the usage of the secure messaging system; and (2) conduct a thematic comparative evaluation of the secure messaging tool, and email and phone calls. Design/Methods This study is a sub-component of a larger project investigating the overall feasibility and acceptability of the C2 platform. Parents of CMC were recruited from a tertiary level Complex Care program to use the C2 platform for a period of 6 months. Messaging data was extracted from C2 usage reports, and phone and email documentation was extracted from the patient’s electronic medical record. Codes were developed iteratively through comprehensive review of the C2 messages. Message, phone, and email data were then coded by two investigators using thematic analysis. Quantitative data from C2 usage reports were analyzed using descriptive statistics. Results Thirty-four parents and 90 care team members, including HCPs, family, and patient information coordinators were registered on the platform. 4027 messages were exchanged on C2. On average, parents sent 33.4 messages and received 66.4 messages on C2. Of all messages on C2, 32.6% were related to comments, questions, and concerns about the platform itself and its features. Figure 1 demonstrates the thematic content of messages related to care, and highlights the differences in messaging content between the 3 forms of communication. Email and phone content focused primarily on clinical care whereas C2 messaging content also emphasized other aspects of care including education, provision of resources, and personal support. Conclusion This study demonstrates the role that a secure messaging system can have for parents of CMC in being active members of their child’s care. Phone and email were mostly used to discuss medications or clinical issues, whereas C2 enabled the discussion of the patient as a whole. The use of secure messaging can therefore complement other forms of communication between providers and families, instead of replacing them. Further research is needed to understand clinical outcomes associated with the use of secure messaging in order to understand its role in improving patient care and overall caregiver and provider experience.

Information needs for designing a home monitoring system for children with medical complexity

2019 ◽  
Vol 122 ◽  
pp. 7-12 ◽  
Author(s):  
Flory L. Nkoy ◽  
Michelle G. Hofmann ◽  
Bryan L. Stone ◽  
Justin Poll ◽  
Lauren Clark ◽  
...  
Keyword(s):  
Monitoring System ◽  
Information Needs ◽  
Home Monitoring ◽  
Children With Medical Complexity ◽  
Medical Complexity

scholarly journals 155 The Development of a National Transfer Document for Older Persons, when Transferring Between Residential and Acute Care Settings

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Pauline O'Reilly ◽  
Pauline Meskell ◽  
Owen Doody ◽  
Michelle Kiely ◽  
Jane O'Doherty ◽  
...  
Keyword(s):  
Focus Group ◽  
Acute Care ◽  
Older Persons ◽  
Information Needs ◽  
Integrative Review ◽  
Focus Group Interviews ◽  
Convenience Sample ◽  
Acute Care Settings ◽  
Group Interviews ◽  
Qualitative Methodologies

Abstract Background The transition of older persons between care settings is recognised as a particularly critical and vulnerable period (Renom-Guiteras et al. 2014). Appropriate documentation and processes are key in assisting the provision of quality, safe, person-centred care when transferring older persons from residential to acute care settings. This paper reports on the design phase of a national transfer document for older persons. The objective was to inform the development of a draft national transfer document. Methods Development consisted of two phases 1) an integrative review and 2) focus group interviews with stakeholders. The review was guided by Whittemore and Knafl‘s (2005) integrative review framework. Data from studies using both quantitative and qualitative methodologies were extracted and thematically analysed. Using a qualitative descriptive approach, focus group interviews (n=8) were conducted with a convenience sample of key stakeholders (n=68) to establish their perspectives regarding transfer documents. Data were analysed using content analysis. Results from both phases were integrated to guide the development of the draft document. A multidisciplinary panel of experts in older persons care, reviewed and provided feedback on the draft transfer document. Results Within the review, thirty identified papers focused on transfer documentation between residential and acute care. Results indicated that using a standardised document can potentiate the delivery and acceptance of relevant person-centred information between all parties when transferring an older person between residential and acute care settings. Qualitative interview findings highlighted important aspects for consideration regarding the layout, content and format of future transfer documentation. Following collaboration with the expert panel the transfer document was developed for piloting. Conclusion Consistency and clarity of information is key for a successful transfer of older persons from residential to acute settings. Information needs to be evidence-based, current, and subject to response and change in accordance with best available international practice.

scholarly journals PAEDIATRIC PROJECT ECHO: EXPLORING THE EDUCATIONAL NEEDS OF ONTARIO HEALTHCARE PROVIDERS WITH INTEREST IN CARING FOR CHILDREN WITH MEDICAL COMPLEXITY

2018 ◽  
Vol 23 (suppl_1) ◽  
pp. e5-e6 ◽  
Author(s):  
Josip Marcinko ◽  
Julia Orkin ◽  
Eyal Cohen ◽  
Michelle Ho ◽  
Chitra Lalloo ◽  
...  
Keyword(s):  
Needs Assessment ◽  
Online Survey ◽  
Allied Health ◽  
Healthcare Providers ◽  
Management Tool ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Project Echo ◽  
Academic Hospitals ◽  
Medical Complexity

Abstract BACKGROUND Project ECHO® is an innovative, interactive model for medical education and healthcare delivery that expands access and capacity to provide evidence-informed care. This model virtually connects specialist interprofessional teams with community healthcare providers (HCPs). It aims to increase knowledge, build capacity, and ultimately, improve patient outcomes by bringing expertise to the community. This project focuses on the first paediatric implementation of Project ECHO for children with medical complexity. This is the first Project ECHO for this population. OBJECTIVES In preparation for this novel program launch in January 2018, a needs assessment was conducted with the objectives of: (1) informing the complex care-specific ECHO curriculum; and (2) assessing community partner preferences for program format and delivery modality. DESIGN/METHODS An online survey (38 items; 15-minutes) was distributed via targeted emails to professional networks, associations, and allied health organizations related to complex care throughout Ontario. The survey assessed interest in specific educational topics as well as program format preferences. An online survey and data management tool (REDCap) was used to build the survey and ensure data quality and security. RESULTS 49 HCPs completed the survey for Paediatric Project ECHO for Children with Medical Complexity. Profession breakdown was: 29% paediatricians, 19% dieticians, 16% nurses, 14% nurse practitioners with the remaining being allied health care professionals, including occupational therapists, social workers and psychologists. Overall, 39% of participants practiced in academic hospitals, 27% in non-academic hospitals, and 35% in other community settings. In terms of program format, 63% preferred weekly 1- or 2-hour educational sessions versus longer sessions. Top medical topics rated by HCPs were: management of nutrition, pain or irritability of unknown origin, and challenging behaviours in children with complex care needs. Other topics of interest included: developmental review, transition to adult care, advanced care planning, funding opportunities, and social supports for the patient as well as caregivers and siblings. CONCLUSION HCPs who expressed interest in Paediatric Project ECHO for Children with Medical Complexity are generally experienced professionals who preferred short educational sessions. The themes that emerged from this needs assessment spanned the biological, psychological and social domains of management of complex care patients. Survey results are being used to inform the development of an evidence-based paediatric complex care curriculum that meets the needs of community HCPs. This project is funded by the MOHLTC.

scholarly journals P134: Organizational interventions and policies to support second victims in acute care settings: a scoping study

CJEM ◽  
2019 ◽  
Vol 21 (S1) ◽  
pp. S112-S113
Author(s):  
L. Wade ◽  
N. Williams ◽  
E. Fitzpatrick ◽  
R. Parker ◽  
K. Hurley
Keyword(s):  
Acute Care ◽  
Peer Support ◽  
Program Effectiveness ◽  
Grey Literature ◽  
Healthcare Providers ◽  
Scoping Study ◽  
Second Victim ◽  
Non Accidental Trauma ◽  
Acute Care Settings ◽  
Definition Of

Introduction: The harm that may come to healthcare providers impacted by adverse events has led them to be called “second victims.” Our objective was to characterize the range and context of interventions used to support second victims in acute care settings. Methods: We performed a scoping study using the process described by Arksey and O'Malley. Comprehensive searches of scientific databases and grey literature were conducted in September 2017 and updated in November 2018. A library scientist searched PubMed, CINAHL, EMBASE and CENTRAL. We sought unpublished literature (Canadian Electronic Library, Proquest and Scopus) and searched reference lists of included studies. Stakeholder organizations and authors of included studies were contacted through email, requesting information on relevant programs. Two reviewers independently reviewed titles and abstracts using predetermined criteria. Using a structured data abstraction form, two reviewers independently extracted data and appraised methodological quality with the Mixed Methods Appraisal Tool (MMAT). All discrepancies were resolved through consensus. A qualitative approach was used to categorize the context and characteristics of the identified strategies and interventions. Results: Our search strategy yielded 3883 results. After screening titles and abstracts, 173 studies underwent full text screening. Extracted data reflected 21 interventions categorized as providing peer-support (n = 7), proactive education (n = 7) or both (n = 7). Programs came from Canada (n = 2), Spain (n = 2), and United States (n = 17). Specific traumatic events were described as the trigger for development of five programs. While some programs were confined to a standard definition of second victim as a healthcare provider traumatized by an “unanticipated adverse patient event” (n = 6), other programs had a broader scope (n = 12) including situations such as non-accidental trauma, stressful anticipated patient events and complaints/litigation (3 programs were unclear about the definition). Confidentiality was assured in nine peer support programs. Outcome measures were often not reported and were limited in terms of quality. Conclusion: This is a new area of study with little scientific rigour from which to determine whether these programs are effective. Concerns about protecting healthcare providers from potential legal proceedings hinder documentation and study of program effectiveness.

Improving Patient Safety and Patient–Provider Communication

2019 ◽  
Vol 4 (5) ◽  
pp. 1017-1027 ◽  
Author(s):  
Richard R. Hurtig ◽  
Rebecca M. Alper ◽  
Karen N. T. Bryant ◽  
Krista R. Davidson ◽  
Chelsea Bilskemper
Keyword(s):  
Acute Care ◽  
Augmentative And Alternative Communication ◽  
Health Care Team ◽  
Provider Communication ◽  
Alternative Communication ◽  
Patient Provider Communication ◽  
Acute Care Settings ◽  
Nurses Perceptions ◽  
Communication Needs ◽  
The Impact

Purpose Many hospitalized patients experience barriers to effective patient–provider communication that can negatively impact their care. These barriers include difficulty physically accessing the nurse call system, communicating about pain and other needs, or both. For many patients, these barriers are a result of their admitting condition and not of an underlying chronic disability. Speech-language pathologists have begun to address patients' short-term communication needs with an array of augmentative and alternative communication (AAC) strategies. Method This study used a between-groups experimental design to evaluate the impact of providing patients with AAC systems so that they could summon help and communicate with their nurses. The study examined patients' and nurses' perceptions of the patients' ability to summon help and effectively communicate with caregivers. Results Patients who could summon their nurses and effectively communicate—with or without AAC—had significantly more favorable perceptions than those who could not. Conclusions This study suggests that AAC can be successfully used in acute care settings to help patients overcome access and communication barriers. Working with other members of the health care team is essential to building a “culture of communication” in acute care settings. Supplemental Material https://doi.org/10.23641/asha.9990962

(Preprint)

2018 ◽  
Author(s):  
Ram Dixit ◽  
Sahiti Myneni
Keyword(s):  
Cancer Survivors ◽  
Mental Models ◽  
Health Systems ◽  
Information Needs ◽  
Health Data ◽  
Information Architecture ◽  
Personal Health ◽  
User Centered Design ◽  
Card Sort ◽  
Connected Health

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.

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