scholarly journals Care maps for children with medical complexity

2017 ◽  
Vol 59 (12) ◽  
pp. 1299-1306 ◽  
Author(s):  
Sherri Adams ◽  
David Nicholas ◽  
Sanjay Mahant ◽  
Natalie Weiser ◽  
Ronik Kanani ◽  
...  
Keyword(s):  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Care Maps

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

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e59-e60
Author(s):  
Blossom Dharmaraj ◽  
Sherri Adams ◽  
Madison Beatty ◽  
Clara Moore ◽  
Arti Desai ◽  
...  
Keyword(s):  
Care Coordination ◽  
Visual Analysis ◽  
Clinical Care ◽  
Subject Area ◽  
Clinical Environment ◽  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Care Maps ◽  
Big Picture ◽  
Initial Uncertainty

Abstract 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.

Care maps and care plans for children with medical complexity

2018 ◽  
Vol 45 (1) ◽  
pp. 104-110 ◽  
Author(s):  
Sherri Adams ◽  
David Nicholas ◽  
Sanjay Mahant ◽  
Natalie Weiser ◽  
Ronik Kanani ◽  
...  
Keyword(s):  
Children With Medical Complexity ◽  
Care Plans ◽  
Medical Complexity ◽  
Care Maps

scholarly journals Telemedicine in children with medical complexity on home ventilation during the COVID‐19 pandemic

2021 ◽  
Author(s):  
Alessandro Onofri ◽  
Martino Pavone ◽  
Simone De Santis ◽  
Elisabetta Verrillo ◽  
Serena Caggiano ◽  
...  
Keyword(s):  
Children With Medical Complexity ◽  
Home Ventilation ◽  
Medical Complexity

scholarly journals G157(P) A toolkit to identify barriers to discharge for children with medical complexity

2020 ◽  
Author(s):  
M Salama ◽  
RK Shanahan ◽  
EZA Bassett ◽  
MR Kelly ◽  
KJ Ellicott ◽  
...  
Keyword(s):  
Children With Medical Complexity ◽  
Medical Complexity

Children with Medical Complexity: Challenges and Opportunities for Human Factors/Ergonomics

2020 ◽  
Vol 64 (1) ◽  
pp. 697-701
Author(s):  
Hanna Barton ◽  
Ryan Coller ◽  
Sara Finesilver ◽  
Christopher Lunsford ◽  
Rupa S. Valdez ◽  
...  
Keyword(s):  
Human Factors ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Children With Medical Complexity ◽  
Patient Journey ◽  
Medical Complexity ◽  
Challenges And Opportunities ◽  
Vulnerable Patient

For vulnerable patient populations, such as children with medical complexity (CMC), the patient journey is fraught with challenges. By providing a range of perspectives including clinicians, a family caregiver, and Human Factors/Ergonomics (HF/E) experts, the present panel will describe the unique opportunities for HF/E to design jointly optimized systems for CMC and their family caregivers, including an explication of some of the specific challenges and complexities related to studying the work of and designing systems for this population. We will also highlight the ways in which HF/E could help in the design of solutions to improve outcomes for families.

120 The Experience of Housing Need Amongst Families Caring for Children with Medical Complexity: A Qualitative Study

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e85-e88
Author(s):  
Clara Moore ◽  
Kara Grace Hounsell ◽  
Arielle Zahavi ◽  
Danielle Arje ◽  
Natalie Weiser ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Future Research ◽  
Complex Care ◽  
Housing Situation ◽  
Children With Medical Complexity ◽  
Trade Off ◽  
Housing Preferences ◽  
Medical Needs ◽  
Medical Complexity ◽  
The Impact

Abstract Primary Subject area Complex Care Background Caregivers of children with medical complexity (CMC) face many financial, social and emotional stressors related to their child’s medical condition(s). Previous research has demonstrated that financial stress among this population can have an impact on their housing situation. Families of CMC may face other unique housing challenges such as disability accommodations in the home and housing space and layout. Objectives The primary aim of this study was to explore families’ perspectives and experiences of housing need, and its relationship to their child’s health status as it pertains to CMC. Design/Methods We conducted a qualitative study using semi-structured interviews to identify themes surrounding families of CMC’s experiences of housing need. Parents of CMC were recruited through purposive sampling from the Complex Care Program at a tertiary pediatric health sciences centre. Recruitment ceased when thematic saturation was reached, as determined by consensus of the research team. Interviews were recorded, transcribed verbatim, coded, and analyzed using thematic analysis. Results Twenty parents completed the interview, of whom 89% were mothers and 42% identified a non-English language as their first language. Two major themes and five subthemes (in parentheses) were identified: 1) the impact of health on housing (housing preferences, housing possibilities, housing outcome as a trade-off) and 2) the impact of housing on health (health of the caregiver, health of the child). Some parents reported that their child’s medical needs resulted in specific preferences regarding the location and layout of their home. Parents also indicated that their caregiving role often affected their income and home ownership status, which in turn, affected their housing possibilities. Thus, the housing situation (location and layout of the home) was often the result of a trade-off between the parent’s housing preferences and possibilities. Conclusion Housing is a recognized social determinant of health. We found that among CMC, health also appears to be a significant determinant of housing as families reported that the health of their child impacted their housing preferences and the options available to them (possibilities). To support the health of CMC and their families, policies targeting improved access to subsidized housing, improved sources of funding and regulations allowing families who rent to make accessibility changes are vital. Future research should investigate the impact of household income on housing need and identify interventions to support appropriate housing for CMC.

545: END-OF-LIFE CARE FOR CHILDREN WITH MEDICAL COMPLEXITY: DOES ADVANCE CARE PLANNING MATTER?

2016 ◽  
Vol 44 (12) ◽  
pp. 213-213
Author(s):  
Danielle DeCourcey ◽  
Melanie Silverman ◽  
Adeolu Oladunjoye ◽  
Joanne Wolfe
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Advance Care
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