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Talking with caregivers of children living in the community with ventricular assist devices
Author(s) -
Petruik Courtney,
Mack Cheryl,
Conway Jennifer,
Buchholz Holger,
van Manen Michael
Publication year - 2017
Publication title -
pediatric transplantation
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.457
H-Index - 69
eISSN - 1399-3046
pISSN - 1397-3142
DOI - 10.1111/petr.13049
Subject(s) - medicine , qualitative research , negotiation , kinship , ventricular assist device , nursing , heart failure , social science , sociology , political science , law
A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VAD s in outpatient settings. Semi‐structured interviews were conducted with 22 caregivers of school‐aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device—implanted yet exterior, mobile yet restricted, and autonomous yet dependent.