Adolescents with Rett syndrome at critical care pathway junctures: Examining clinicians' decision to initiate invasive long-term ventilation.
Eur J Paediatr Neurol
; 49: 113-119, 2024 Mar.
Article
en En
| MEDLINE
| ID: mdl-38484415
ABSTRACT
BACKGROUND:
The initiation of invasive long-term ventilation (I-LTV) for an adolescent with Rett Syndrome (RTT) involves many serious bioethical considerations. In moving towards a more inclusive model of patient participation, transparency surrounding the main influencing factors around this decision is important.OBJECTIVE:
We aimed to identify the main drivers influencing a clinician's decision to support initiation of I-LTV for an adolescent with RTT.METHOD:
We used an anonymous online vignette-based factorial survey. The survey was distributed internationally through eight professional multi-disciplinary organisations to reach clinicians working in paediatrics.RESULTS:
We analysed 504 RTT vignettes completed by 246 clinicians using mixed effect regression modelling. The main three significant influencing factors identified were parental agreement with the decision to support initiation, the family's support network, and proximity to a tertiary care centre. Additional comments from participants focused on family support, and the importance of on-going communication with the family.CONCLUSION:
As the rights of those with disabilities improve and participation of adolescents in decision-making becomes more established, effective communications with the family around goals of care and particular sensitivity and reflective practice around methods of consensus building will likely contribute to a positive decision-making process at this difficult time.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Planificación de Atención al Paciente
/
Médicos
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Respiración Artificial
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Síndrome de Rett
/
Cuidados Críticos
/
Toma de Decisiones Clínicas
Límite:
Adolescent
/
Adult
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Aged
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Aged80
/
Female
/
Humans
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Male
/
Middle aged
Idioma:
En
Revista:
Eur J Paediatr Neurol
Asunto de la revista:
NEUROLOGIA
/
PEDIATRIA
Año:
2024
Tipo del documento:
Article