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

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.