‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience
Ventricular Assist Devices (VAD) are enabling children experiencing severe heart failure, who would have otherwise died, to be bridged to transplant or recovery. Donated Paediatric hearts are in short supply, so the use of VAD is likely to continue to support paediatric patients for the foreseeable...
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| Format: | Article |
| Language: | English |
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Elsevier
2022-12-01
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| Series: | SSM: Qualitative Research in Health |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2667321522000774 |
| _version_ | 1811198837625192448 |
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| author | L. Crowe E. Simpson K. Barlow J. Rankin |
| author_facet | L. Crowe E. Simpson K. Barlow J. Rankin |
| author_sort | L. Crowe |
| collection | DOAJ |
| description | Ventricular Assist Devices (VAD) are enabling children experiencing severe heart failure, who would have otherwise died, to be bridged to transplant or recovery. Donated Paediatric hearts are in short supply, so the use of VAD is likely to continue to support paediatric patients for the foreseeable future. This study explored the experiences of children and young people (CYP) being supported by VAD and their families. Semi-structured interviews were undertaken with 24 families after transplant (either parents only, parents and CYP together, or CYP only), and two participant observations with families currently living with a child on VAD. This study was conducted at one of two UK Paediatric Heart Transplantation Centres. The data suggest that families adjust to a ‘new normal’ that the heart failure and subsequent medical intervention brings. This involves adjusting to the initial diagnosis and need for VAD implantation; establishing a new life on VAD; the emotional roller coaster that comes with this highly invasive treatment option; and, adapting to a new way of life following transplant. This research adds to the limited available research on the experience of families with a CYP being supported by VAD. The family viewpoint raises important issues about highly invasive treatment, the lived realities of VAD implantation and subsequent transplant, and the forever changed lives post discharge. These perspectives are of great importance when considering the growth of both VAD implantation and paediatric heart transplantations as established therapeutic treatment options. |
| first_indexed | 2024-04-12T01:38:07Z |
| format | Article |
| id | doaj.art-15737a3c51e94dc4b218e7b0a5a4c0eb |
| institution | Directory Open Access Journal |
| issn | 2667-3215 |
| language | English |
| last_indexed | 2024-04-12T01:38:07Z |
| publishDate | 2022-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | SSM: Qualitative Research in Health |
| spelling | doaj.art-15737a3c51e94dc4b218e7b0a5a4c0eb2022-12-22T03:53:15ZengElsevierSSM: Qualitative Research in Health2667-32152022-12-012100115‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experienceL. Crowe0E. Simpson1K. Barlow2J. Rankin3Population Health Sciences Institute, Baddiley-Clark Building, Newcastle University, NE2 4AX, UK; Corresponding author.Freeman Hospital, Newcastle Hospitals NHS Trust, Freeman Road, High Heaton, Newcastle Upon Tyne, NE7 7DN, UKFreeman Hospital, Newcastle Hospitals NHS Trust, Freeman Road, High Heaton, Newcastle Upon Tyne, NE7 7DN, UKPopulation Health Sciences Institute, Baddiley-Clark Building, Newcastle University, NE2 4AX, UKVentricular Assist Devices (VAD) are enabling children experiencing severe heart failure, who would have otherwise died, to be bridged to transplant or recovery. Donated Paediatric hearts are in short supply, so the use of VAD is likely to continue to support paediatric patients for the foreseeable future. This study explored the experiences of children and young people (CYP) being supported by VAD and their families. Semi-structured interviews were undertaken with 24 families after transplant (either parents only, parents and CYP together, or CYP only), and two participant observations with families currently living with a child on VAD. This study was conducted at one of two UK Paediatric Heart Transplantation Centres. The data suggest that families adjust to a ‘new normal’ that the heart failure and subsequent medical intervention brings. This involves adjusting to the initial diagnosis and need for VAD implantation; establishing a new life on VAD; the emotional roller coaster that comes with this highly invasive treatment option; and, adapting to a new way of life following transplant. This research adds to the limited available research on the experience of families with a CYP being supported by VAD. The family viewpoint raises important issues about highly invasive treatment, the lived realities of VAD implantation and subsequent transplant, and the forever changed lives post discharge. These perspectives are of great importance when considering the growth of both VAD implantation and paediatric heart transplantations as established therapeutic treatment options.http://www.sciencedirect.com/science/article/pii/S2667321522000774Paediatric heart transplantVentricular assist deviceQualitative |
| spellingShingle | L. Crowe E. Simpson K. Barlow J. Rankin ‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience SSM: Qualitative Research in Health Paediatric heart transplant Ventricular assist device Qualitative |
| title | ‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience |
| title_full | ‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience |
| title_fullStr | ‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience |
| title_full_unstemmed | ‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience |
| title_short | ‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience |
| title_sort | a new normal ventricular assist device implantation and subsequent heart transplant in children and adolescents a family experience |
| topic | Paediatric heart transplant Ventricular assist device Qualitative |
| url | http://www.sciencedirect.com/science/article/pii/S2667321522000774 |
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