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Training and support for caring for a child’s gastrostomy: a survey with family carers
OBJECTIVE: The aim of this study was to explore family carers’ experiences of training and ongoing support for caring for their child’s gastrostomy, and to get their views on how this could be improved. METHODS: A mixed-methods online survey with 146 family carers (eg, parents, grandparents) who car...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8317118/ https://www.ncbi.nlm.nih.gov/pubmed/34395927 http://dx.doi.org/10.1136/bmjpo-2021-001068 |
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author | Page, Bethan Butler, Siobhan Smith, Colette Lee, Alex CH Vincent, Charles A |
author_facet | Page, Bethan Butler, Siobhan Smith, Colette Lee, Alex CH Vincent, Charles A |
author_sort | Page, Bethan |
collection | PubMed |
description | OBJECTIVE: The aim of this study was to explore family carers’ experiences of training and ongoing support for caring for their child’s gastrostomy, and to get their views on how this could be improved. METHODS: A mixed-methods online survey with 146 family carers (eg, parents, grandparents) who care for a child with a gastrostomy. Family carers rated their own experience of training and support and made recommendations for how training and support could be improved for future families. RESULTS: The nature and extent of the training family carers reported receiving varied considerably. Many felt that the demonstrations they received in hospital were too brief. Two in five family carers rated their confidence caring for their child’s gastrostomy as very low in the first few weeks after surgery. Parents valued ongoing learning and support from other parents and support from community nurses. Videos and simulation practice were rated as useful formats of training, in addition to face-to-face supervised practice with a clinician. Parents liked how real life the example video shown was, and rated nearly all suggested video topics as ‘very helpful’, especially troubleshooting topics. CONCLUSIONS: Our study found substantial variability in family carers’ descriptions of the training and support they received to care for their child’s gastrostomy. Training often did not meet family carers’ needs. We need to invest in better training and support for families and learn from their recommendations. Improvements to training and support for families (eg, through instructional videos) have the potential to improve family carers’ confidence and competence, and reduce the risk of problems and complications which cause harm to children and increase demand on National Health Service (NHS) resources. |
format | Online Article Text |
id | pubmed-8317118 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-83171182021-08-13 Training and support for caring for a child’s gastrostomy: a survey with family carers Page, Bethan Butler, Siobhan Smith, Colette Lee, Alex CH Vincent, Charles A BMJ Paediatr Open Gastroenterology OBJECTIVE: The aim of this study was to explore family carers’ experiences of training and ongoing support for caring for their child’s gastrostomy, and to get their views on how this could be improved. METHODS: A mixed-methods online survey with 146 family carers (eg, parents, grandparents) who care for a child with a gastrostomy. Family carers rated their own experience of training and support and made recommendations for how training and support could be improved for future families. RESULTS: The nature and extent of the training family carers reported receiving varied considerably. Many felt that the demonstrations they received in hospital were too brief. Two in five family carers rated their confidence caring for their child’s gastrostomy as very low in the first few weeks after surgery. Parents valued ongoing learning and support from other parents and support from community nurses. Videos and simulation practice were rated as useful formats of training, in addition to face-to-face supervised practice with a clinician. Parents liked how real life the example video shown was, and rated nearly all suggested video topics as ‘very helpful’, especially troubleshooting topics. CONCLUSIONS: Our study found substantial variability in family carers’ descriptions of the training and support they received to care for their child’s gastrostomy. Training often did not meet family carers’ needs. We need to invest in better training and support for families and learn from their recommendations. Improvements to training and support for families (eg, through instructional videos) have the potential to improve family carers’ confidence and competence, and reduce the risk of problems and complications which cause harm to children and increase demand on National Health Service (NHS) resources. BMJ Publishing Group 2021-07-27 /pmc/articles/PMC8317118/ /pubmed/34395927 http://dx.doi.org/10.1136/bmjpo-2021-001068 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. |
spellingShingle | Gastroenterology Page, Bethan Butler, Siobhan Smith, Colette Lee, Alex CH Vincent, Charles A Training and support for caring for a child’s gastrostomy: a survey with family carers |
title | Training and support for caring for a child’s gastrostomy: a survey with family carers |
title_full | Training and support for caring for a child’s gastrostomy: a survey with family carers |
title_fullStr | Training and support for caring for a child’s gastrostomy: a survey with family carers |
title_full_unstemmed | Training and support for caring for a child’s gastrostomy: a survey with family carers |
title_short | Training and support for caring for a child’s gastrostomy: a survey with family carers |
title_sort | training and support for caring for a child’s gastrostomy: a survey with family carers |
topic | Gastroenterology |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8317118/ https://www.ncbi.nlm.nih.gov/pubmed/34395927 http://dx.doi.org/10.1136/bmjpo-2021-001068 |
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