Life with pediatric home ventilation: Expectations versus experience

Abstract

Objectives To explore the family experience of home ventilation through a comparison of anticipated home life changes with subsequent experiences. Study Design Guided interviews with parents across three states who chose home ventilation for their child within the last 5 years. Patient‐Subject Selection Purposive sampling of parents who chose home ventilation for their child within the last 5 years. Methods Interviews were transcribed for qualitative analysis and analyzed for thematic saturation and prevalence of codes. Results Twenty families were interviewed. Families generally reported not considering potential home life changes when facing the decision about home ventilation; instead, they worried most about medical management. These concerns reversed in importance later. Families learned medical management quickly but felt largely unprepared for the extensive changes to their home life, including isolation, altered relationships with extended family and community, effects on siblings, financial strain, and need for physical changes to their house. Families had not anticipated how much they would be affected by home healthcare as a new part of their life. Conclusions The priorities that families consider during decisions about pediatric home ventilation may not be aligned with the actual home experience of this technology. Given that the success of home ventilation largely rests with the family's care, family expectations for home life adaptations must be augmented, as should postdischarge supports for families with complex home care experiences.

Long‐term ventilatory support for children: there's no place like home

“…Poor sleep quality and quantity have been reported in family caregivers of children requiring medical technology in the home, putting them at risk of sleep deprivation and impaired daytime functioning 5 . Marital strain, depression, constraints on lifestyle and the impact on siblings all need to be recognized as potential issues faced by the family of the home‐ventilated child 6 . As highlighted in this position paper, 4 few centres have access to appropriate psychological services to aid and counsel families in working through these issues, and this remains an area for programme improvement across all centres.…”

“…5 Marital strain, depression, constraints on lifestyle and the impact on siblings all need to be recognized as potential issues faced by the family of the home-ventilated child. 6 As highlighted in this position paper, 4 few centres have access to appropriate psychological services to aid and counsel families in working through these issues, and this remains an area for programme improvement across all centres.…”

Collaborative decision‐making: A framework for decision‐making about life‐sustaining treatments in children with medical complexity

“…One of the gaps in the decision‐making process is the lack of consideration and preparation by HCP about home care of children with tracheostomy. 10 , 21 CDM addresses this gap by soliciting information about child's home environment and the resources available to support caregivers. CDM also engages caregivers as an expert in the child's care.…”

“…The CDM process starts with HCP obtaining greater understanding about the child's health condition, effect of tracheostomy, and about the child and family from a variety of sources (including caregivers). One of the gaps in the decision‐making process is the lack of consideration and preparation by HCP about home care of children with tracheostomy 10,21 . CDM addresses this gap by soliciting information about child's home environment and the resources available to support caregivers.…”

Year in review 2021: Neuromuscular diseases

“…First, in the United States, Henderson et al 1 completed a series of semi‐guided interviews studying the experience of parents living with pediatric home ventilation. They recruited 20 English‐speaking families that had faced decisions about home ventilation for their child within the last 5 years.…”