Maximizing Health Outcomes in a Medical Home for Children with Medical Complexity: The Beacon Program

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

“…27,43,44 Clinical guidelines for children with home ventilation are available to assist providers, 45,46 and studies support favorable associations with patient- and family-centered care. 13,22,24,47,48 The families of CWT “wear many hats” in their role as primary caregiver including child advocate, nurse, care coordinator, and parent. 48,49 Having a CWT can be initially traumatic as evidenced by many of our caregivers’ feelings of stress, fear, loss, and being overwhelmed.…”

“…Multiple studies demonstrate effectiveness of the medical home model for CMC. 13-15 This model promotes continuous, comprehensive, family-centered, accessible, coordinated, compassionate, and culturally effective care. 14-18 Mutual trust and responsibility exist between families/clinical providers, and a broad supportive network exists to effectively communicate and coordinate care.…”

“…14-18 Mutual trust and responsibility exist between families/clinical providers, and a broad supportive network exists to effectively communicate and coordinate care. 18,19 While the principles of the medical home are described in several models, 11,13,15,20 protocols for meeting caregiver needs and for CWT care transitions are lacking. Understanding caregiver experiences for CWT living at home fosters patient-/family-centered care, may ultimately decrease hospital readmissions, and improve home care for CWT.…”

A systematic concept analysis of ‘technology dependent’: challenging the terminology

“…Care delivery across acute and community care services can be complicated by inconsistent standards for discharge to home [107,[124][125][126][127]. Specific areas that could enhance care delivery include enhanced access to specialist care, including same-day appointments to appropriately trained physicians in the community [80,128,129]; increased use of telehealth, electronic records, and patient summaries [130,131]; specialist home care visits in the initial week following discharge to home [81]; and increased access to respite care in and out of the home [103,113,[130][131][132][133][134][135][136]. Access to, and governance of, appropriately trained nurses is identified as an ongoing challenge as this population of children grows [5,35].…”

Impacto das condições crônicas complexas em pacientes pediátricos na utilização de recursos de saúde e nos custos da hospitalização em hospital público universitário terciário

“…Berry et al (2011b), inclusive, publicaram um estudo mostrando que crianças já atendidas num programa de cuidado coordenado, a maioria delas com comprometimento neurorológico, continuaram tendo elevadas taxas de readmissão. Apesar das dificuldades citadas acima, os resultados com tais programas de coordenação de cuidado têm sido promissores e acredita-se que a qualidade da assistência oferecida para as crianças medicamente complexas tenha o potencial de redução de custos (CADY;FINKELSTEIN;KELLY, 2009;LARSON;HOFFMAN;ARTMAN, 2017;MOSQUERA et al, 2014;NORITZ et al, 2017;PETITGOUT et al, 2013).…”