“This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy

Amar-Dolan, Laura; Horn, Mary H.; O’Connell, Brianna; Parsons, Susan K.; Roussin, Christopher; Weinstock, Peter; Graham, Robert J.

doi:10.1513/annalsats.201910-780oc

Cited by 59 publications

(68 citation statements)

References 33 publications

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“…The procedure is the first step in a long process of transitioning ventilatory care from the hospital to home. A well-orchestrated use of hospital services and education is necessary to facilitate this process, which places a unique burden of responsibility on patient families [6][7][8].…”

Section: Overviewmentioning

confidence: 99%

“…Care for pediatric patients with a tracheostomy can be very challenging due to the medical complexity of these patients and the direct trials of home tracheostomy management [6][7][8]. Thus, a clear and open multidisciplinary discussion with the family is warranted prior to surgery and should address the patient's long-term prognosis, short-term risks, and costs associated with long-term tracheostomy care.…”

Section: Care Coordinationmentioning

confidence: 99%

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Update on Pediatric Tracheostomy: Indications, Technique, Education, and Decannulation

Fuller

Wineland

Richter

2021

Curr Otorhinolaryngol Rep

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Purpose of Review Tracheostomy in a child demands critical pre-operative evaluation, deliberate family education, competent surgical technique, and multidisciplinary post-operative care. The goals of pediatric tracheostomy are to establish a safe airway, optimize ventilation, and expedite discharge. Herein we provide an update regarding timing, surgical technique, complications, and decannulation, focusing on a longitudinal approach to pediatric tracheostomy care. Recent Findings Pediatric tracheostomy is performed in approximately 0.2% of inpatient stays among tertiary pediatric hospitals. Mortality in children with tracheostomies ranges from 10–20% due to significant comorbidities in this population. Tracheostomy-specific mortality and complications are now rare. Recent global initiatives have aimed to optimize decision-making, lower surgical costs, reduce the length of intensive care, and eliminate perioperative wound complications. The safest road to tracheostomy decannulation in children remains to be both patient and provider dependent. Summary Recent literature provides guidance on safe, uncomplicated, and long-term tracheostomy care in children. Further research is needed to help standardize decannulation protocols.

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Section: Overviewmentioning

confidence: 99%

Section: Care Coordinationmentioning

confidence: 99%

Update on Pediatric Tracheostomy: Indications, Technique, Education, and Decannulation

Fuller

Wineland

Richter

2021

Curr Otorhinolaryngol Rep

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“…Este punto es fundamental para las familias de los NPCC, ya que la dependencia de tecnología médica y las importantes limitaciones funcionales de los niños complican sus desplazamientos por la necesidad de vehículos adaptados, oxigenoterapia durante el transporte, sillas especiales, necesidad de ventilación mecánica, etc. 20 , 21 . La pediatría de AP proporciona una asistencia eficiente y humanizada, próxima al niño y a su familia, y tiene en cuenta las características de su entorno.…”

Section: Discussionunclassified

“…Debido a la severidad de las patologías y/o al soporte tecnológico es fundamental capacitar a las familias para solventar posibles complicaciones. No encontrar un suficiente apoyo ante estas descompensaciones en AP puede hacer que acudan a los servicios de urgencias hospitalarias también en otros problemas menos relevantes 21 , 24 . La dificultad para el manejo del niño está directamente relacionada con la complejidad del niño, siendo el problema especialmente importante en las terapias respiratorias como la traqueostomía y la ventilación mecánica 19 , 23 .…”

Section: Discussionunclassified

Situación actual del paciente pediátrico con patología crónica compleja: una experiencia entre atención primaria y hospitalaria

Tapiador¹,

Alcalá

Alonso

et al. 2021

Atención Primaria

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Objetivo Analizar la valoración de la atención a los niños con patología crónica compleja (NPCC) en atención primaria (AP), desde el punto de vista de sus médicos y de sus familias. Diseño Estudio observacional, descriptivo y transversal. Emplazamiento Pediatría de AP y unidad de patología crónica compleja (UPCC) del Hospital Universitario La Paz (HULP). Participantes Pacientes y familiares de la UPCC y sus médicos de AP de la Comunidad de Madrid (CAM). Intervenciones Realización de encuestas validadas presenciales y online. Mediciones principales Grado de satisfacción en la formación, capacitación y manejo específico del NPCC según escalas tipo Likert. Resultados Se encuestaron 53 familias y 170 médicos de AP (96,5% pediatras). Los resultados de la encuesta a familiares revelan descoordinación entre niveles asistenciales (73,6%), escasa confianza en el primer nivel asistencial e impresión de poca capacidad de resolución de problemas por parte de pediatría de AP (50%). Entre los médicos de AP destaca la poca formación para el seguimiento de los NPCC (96,5%), escasa experiencia en su manejo (93%) e insuficiente comunicación con el hospital (80,5%). La falta de tiempo en las consultas es un problema común, percibido por pediatras y pacientes. Conclusiones La falta de coordinación entre AP y atención hospitalaria (AH) se detecta como un problema importante en la continuidad asistencial de NPCC. Son necesarias intervenciones que mejoren esta coordinación. La AP es cercana a la familia, pero precisa mejorar la formación y capacitación de los profesionales en problemas de salud y soporte tecnificado de NPCC, así como incrementar el tiempo necesario para su atención.

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“…The MDT should therefore include individuals able to travel to patients' homes or care facilities with the necessary skills-set and equipment to deliver these functions. A recent qualitative study has highlighted the importance of the support a home care team provides, particularly in patients requiring long-term tracheostomy ventilation [ 123 ]. The logistics that underpin this service should not be underestimated and financial remuneration for this service will likely require a bespoke system, as “ ad hoc ” costs are more likely.…”

Section: Outreach Team and Telehealthmentioning

confidence: 99%

The adult multidisciplinary respiratory neuromuscular clinic

Shah

Murphy

Kaltsakas

2020

Breathe

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Many neuromuscular disorders (NMD) are complicated by respiratory failure. These patients are best managed in a multidisciplinary outpatient clinic to provide timely access to the various disciplines they require. The key mainstay of treatment of respiratory failure in patients with NMD is noninvasive ventilation, supported by secretion clearance, speech and language therapy, optimisation of nutrition and the maintenance of mobility. Patients with specific conditions may also require cardiology, neurology, orthopaedics, urology and psychological services. The respiratory NMD multidisciplinary team should also provide access to palliative care, and caregiver health and wellbeing should also be reviewed at clinical reviews. The future of care for the respiratory NMD patient will increasingly involve home services and telehealth and the clinic should be equipped and resourced to deliver these. Although not all health systems will be able to provide all elements of the multidisciplinary team discussed here, this review provides the “ideal” recipe for the adult multidisciplinary team and the evidence base underpinning this from which a clinic can be developed.Educational aimsTo provide an overview of the care of an adult neuromuscular disorder patient presenting to the multidisciplinary respiratory clinic.To provide the evidence base for establishing the different elements of the multidisciplinary respiratory clinic.

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“This Is How Hard It Is”. Family Experience of Hospital-to-Home Transition with a Tracheostomy

Cited by 59 publications

References 33 publications

Update on Pediatric Tracheostomy: Indications, Technique, Education, and Decannulation

Update on Pediatric Tracheostomy: Indications, Technique, Education, and Decannulation

Situación actual del paciente pediátrico con patología crónica compleja: una experiencia entre atención primaria y hospitalaria

The adult multidisciplinary respiratory neuromuscular clinic

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