Parental responsibility for pediatric ventricular assist devices: Views of families on the acceptability of hospital discharge.
heart transplant
outpatient care
pediatric heart transplant
pediatrics
qualitative
ventricular assist device
Journal
Pediatric transplantation
ISSN: 1399-3046
Titre abrégé: Pediatr Transplant
Pays: Denmark
ID NLM: 9802574
Informations de publication
Date de publication:
02 2020
02 2020
Historique:
received:
12
07
2019
revised:
18
10
2019
accepted:
28
10
2019
pubmed:
18
12
2019
medline:
27
1
2021
entrez:
18
12
2019
Statut:
ppublish
Résumé
Paracorporeal pediatric VAD therapy requires hospital residency due to device and patient factors. Discharge home is potentially possible with a mobile driving unit. This study aimed to investigate family views on hospital discharge of a child on VAD. Qualitative methodologies were adopted. We undertook 24 interviews of families who had a transplanted child previously on a VAD, and participant observations of two families who were current VAD patients residing in hospital. Families experienced overwhelming emotions as they spent time adjusting to the diagnosis, the need for transplant, family separation, and financial concerns. Despite many parents being partially/fully trained on the VAD, the majority would be reluctant to be discharged, fearing emergencies, high burden of care needs, and social isolation. Three families with a child on a Berlin Heart expressed willingness to reside in the hospital accommodation at least part-time, to facilitate private family time. One child on HeartWare was discharged home, with another going through the discharge process. Discharge was not acceptable to most families if this meant downgrading their child's transplant listing urgency status. Parents and children on VAD value independence and some private family time but not at the perceived expense of safety. Families preferred their child on VAD to remain resident in hospital even if mobility is improved with a mobile driving device. Parental education should acknowledge the high burden on families, risks of a remote setting and offer intermediate residency options. It cannot be assumed families want hospital discharge.
Sections du résumé
BACKGROUND
Paracorporeal pediatric VAD therapy requires hospital residency due to device and patient factors. Discharge home is potentially possible with a mobile driving unit. This study aimed to investigate family views on hospital discharge of a child on VAD.
METHODS
Qualitative methodologies were adopted. We undertook 24 interviews of families who had a transplanted child previously on a VAD, and participant observations of two families who were current VAD patients residing in hospital.
RESULTS
Families experienced overwhelming emotions as they spent time adjusting to the diagnosis, the need for transplant, family separation, and financial concerns. Despite many parents being partially/fully trained on the VAD, the majority would be reluctant to be discharged, fearing emergencies, high burden of care needs, and social isolation. Three families with a child on a Berlin Heart expressed willingness to reside in the hospital accommodation at least part-time, to facilitate private family time. One child on HeartWare was discharged home, with another going through the discharge process. Discharge was not acceptable to most families if this meant downgrading their child's transplant listing urgency status.
CONCLUSION
Parents and children on VAD value independence and some private family time but not at the perceived expense of safety. Families preferred their child on VAD to remain resident in hospital even if mobility is improved with a mobile driving device. Parental education should acknowledge the high burden on families, risks of a remote setting and offer intermediate residency options. It cannot be assumed families want hospital discharge.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e13636Subventions
Organisme : Medical Research Council
ID : MR/K02325X/1
Pays : United Kingdom
Informations de copyright
© 2019 Wiley Periodicals, Inc.
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