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

scholarly journals Interaction with Pediatric Healthcare Providers Prior to Admission for Pediatric Critical Illness Due to Respiratory Failure

2021 ◽  
Author(s):  
Marie A Pfarr ◽  
Fola O Odetola ◽  
Lauren M Yagiela
Keyword(s):  
Primary Care ◽  
Respiratory Failure ◽  
Critical Illness ◽  
Healthcare Provider ◽  
Care Provider ◽  
Primary Care Provider ◽  
Office Visit ◽  
Telephone Call ◽  
Children With Medical Complexity ◽  
Medical Complexity

Abstract Objective: To describe pre-hospital healthcare provider contact and the impact of a child’s medical complexity on patterns of contact in the 7 days prior to admission for pediatric critical illness due to respiratory failure.Study Design: Retrospective analysis of data on patients ≤18 years with respiratory failure admitted to a quaternary pediatric intensive care unit between January 1, 2013 and December 31, 2014. Pre-hospitalization provider contact was compared to the child’s medical complexity using Chi square and Kruskal-Wallis tests for categorical and continuous data, respectively.Results: Of 163 patients, the median age was 2.1 years, 59.5% were male, and 33.1% had medical complexity. In the 7 days prior to hospitalization, 68 families (41.7%) had 71 encounters with providers including primary care provider telephone call/office visit (66.2%), telephone contact/office visit with a specialist provider (31%), or urgent care visit (2.8%). Children without medical complexity were more likely than children with medical complexity to have a primary care provider telephone call/ office visit (36.7% vs 13.0%, p=0.004). In contrast, children with medical complexity were more likely to have a telephone call or office visit with a specialist (29.6% vs 5.5%, p<0.001).Conclusions: In the 7 days before hospitalization for pediatric respiratory failure, nearly 1 in 2 families contacted a healthcare provider with illness-related concerns. During acute medical crisis, children without medical complexity were more likely to contact their primary care provider, while children with medical complexity were more likely to contact a specialist. These findings have important implications for pediatric care delivery.

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