Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling

Abstract

Children with severe neurological impairment (SNI) have central nervous system disorders that arise in childhood and result in motor and cognitive impairment as well as complex developmental disability that requires much assistance with activities of daily living. 1 Some children with SNI receive home mechanical ventilation (HMV), defined as invasive ventilatory support with a tracheostomy and therefore clinician counseling must include relevant information about its known risks and benefits. 2,3 Counseling about HMV for children with SNI depends on many factors and is challenging for both parents and clinicians. 4,5 Children with SNI often have overlapping chronic

Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

“…There is variation regarding decision‐making algorithms with some advocating for small groups of people (primary HCP, patient, and family‐caregivers) versus larger multidisciplinary models (addition of multi‐specialty HCPs, extended family, community members). Early identification of family‐caregivers' communication style by frontline HCPs as well as barriers and facilitators for decision‐making have been described as valuable for family‐caregivers 9,13,15,18,22,23,30,32–34,45,47–49,60,66,67 . Documentation is important to support team communication and quality assurance 32,33,59 …”

“…Miscommunication with and within the medical team, inconsistent messaging among HCPs, and depersonalization when talking about their child were provider‐related barriers consistently identified by both family‐caregivers and HCPs. It is important to highlight that only five studies reflected on the experience of family‐caregivers who declined tracheostomy 13–15,67,76 . Also notable is that bereaved parents tend to be excluded from studies.…”

“…It is important to highlight that only five studies reflected on the experience of family-caregivers who declined tracheostomy. [13][14][15]67,76 Also notable is that bereaved parents tend to be excluded from studies.…”

Complex care in a family‐oriented setting is crucial for parental support

“…Bogetz et al have accentuated how much support and encouragement families require, and how a staff member's dispiriting muttering to themselves may echo in their psyche years later. 1 Parents resented medical information they felt was unhelpful, even if precise, such as detailed prediction as to the events they might witness in case of acute deterioration in the child's condition. These observations raise subtleties of what the professionals feel the families need to know versus the family's wishes.…”

“…Caring for a child with complex medical problems at home is a daunting endeavor. Bogetz et al have accentuated how much support and encouragement families require, and how a staff member's dispiriting muttering to themselves may echo in their psyche years later 1 . Parents resented medical information they felt was unhelpful, even if precise, such as detailed prediction as to the events they might witness in case of acute deterioration in the child's condition.…”