Intervention research to improve care and outcomes for children with medical complexity and their families

2022 ◽  
pp. 101126
Author(s):  
James A. Feinstein ◽  
Jay G. Berry ◽  
Chris Feudtner
Keyword(s):  
Intervention Research ◽  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Outcomes For Children

Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review

2019 ◽  
Vol 23 (9) ◽  
pp. 1167-1176 ◽  
Author(s):  
Elizabeth S. Barnert ◽  
Ryan J. Coller ◽  
Bergen B. Nelson ◽  
Lindsey R. Thompson ◽  
John Tran ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Outcomes ◽  
Population Health ◽  
Children With Medical Complexity ◽  
Key Population ◽  
Medical Complexity ◽  
Outcomes For Children

Family‐provider consensus outcomes for children with medical complexity

2018 ◽  
Vol 61 (9) ◽  
pp. 1093-1100 ◽  
Author(s):  
Nora Fayed ◽  
Astrid Guttmann ◽  
Allison Chiu ◽  
Meghan Gardecki ◽  
Julia Orkin ◽  
...  
Keyword(s):  
Children With Medical Complexity ◽  
Medical Complexity ◽  
Outcomes For Children

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.

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