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Life with pediatric home ventilation: Expectations versus experience
Author(s) -
Henderson Carrie M.,
Raisanen Jessica C.,
Shipman Kelly J.,
Jabre Nicholas A.,
Wilfond Benjamin S.,
Boss Renee D.
Publication year - 2021
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.25577
Subject(s) - medicine , nonprobability sampling , thematic analysis , ventilation (architecture) , family life , medical home , qualitative research , gerontology , family medicine , nursing , environmental health , primary care , population , sociology , social science , gender studies , mechanical engineering , engineering
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.