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The experiences of individuals with cervical spinal cord injury and their family during post-injury care in non-specialised and specialised units in UK

McRae, J; Smith, C; Emmanuel, A; Beeke, S; (2020) The experiences of individuals with cervical spinal cord injury and their family during post-injury care in non-specialised and specialised units in UK. BMC Health Services Research , 20 (1) , Article 783. 10.1186/s12913-020-05659-8. Green open access

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Abstract

BACKGROUND: Individuals with acute cervical spinal cord injury require specialised interventions to ensure optimal clinical outcomes especially for respiratory, swallowing and communication impairments. This study explores the experiences of post-injury care for individuals with cervical spinal cord injury and their family members during admissions in specialised and non-specialised units in the United Kingdom. METHODS: Semi-structured interviews were undertaken with individuals with a cervical spinal cord injury and their family member, focussing on the experience of care across units. Eight people with spinal cord injury levels from C2 to C6, were interviewed in their current care settings. Six participants had family members present to support them. Interviews were audio-recorded and transcribed with data inputted into NVivo for thematic analysis. RESULTS: The study identified six themes from the participant interviews that highlighted different experiences of care in non-specialised and specialised settings. A number of these were related to challenges with the system, whilst others were about the personal journey of recovery. The themes were titled as: adjustment, transitions, "the golden opportunity", "when you can't eat", communication, and "in the hands of the nurses and doctors". CONCLUSIONS: Whilst participants reported being well cared for in non-specialised units, they felt that they did not receive specialist care and this delayed their rehabilitation. Participants were dependent on healthcare professionals for information and care and at times lost hope for recovery. Staff in non-specialised units require training and guidance to help provide support for those with dysphagia and communication difficulties, as well as reassurance to patients and families whilst they wait for transfer to specialised units.

Type: Article
Title: The experiences of individuals with cervical spinal cord injury and their family during post-injury care in non-specialised and specialised units in UK
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12913-020-05659-8
Publisher version: https://doi.org/10.1186/s12913-020-05659-8
Language: English
Additional information: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Keywords: Cervical cord, Communication, Deglutition disorders, Hospitalisation, Spinal cord injuries
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Language and Cognition
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Inst for Liver and Digestive Hlth
URI: https://discovery.ucl.ac.uk/id/eprint/10109019
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