1. 233VP Review of inpatient care of children affected by neuromuscular disorders or complex neurodisability from the carer perspective.
- Author
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Thomas, S., Gallagher, S., Khalid, A., and Alhaswani, Z.
- Subjects
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YOUNG adults , *CHILD health services , *SPINAL muscular atrophy , *DISABILITY chairs , *DUCHENNE muscular dystrophy - Abstract
While the care of children and young people affected by neuromuscular disorders focuses on promoting health and aims to avoid hospital admissions, many require a number of admissions throughout their life. Hospital admissions are associated with increased anxiety and can be a traumatic and frightening experience. A review of inpatient care from the carer perspective was undertaken as part of a larger project to evaluate care on the children's medical ward which includes a high dependency unit. The ward staff work closely with the specialist paediatric neuromuscular service in Birmingham Heartlands Hospital. A structured interview was undertaken with a parent or carer after discharge following a hospital admission longer than forty-eight hours; this included elective and emergency admissions. A total of seven full interviews were completed. The cohort included three children affected by Duchenne Muscular Dystrophy, two children affected by Spinal Muscular Atrophy, one affected by Congenital Muscular Dystrophy and one child affected by Quadriplegic Cerebral Palsy. All the children were at a non-ambulatory stage. Specific areas addressed included the admission process, availability of equipment, communication and continuity of care, patient safety and the discharge process. Clear themes were identified highlighting equipment shortages, facilities and space problems, manual handling training needs and communication issues on multiple levels. The results supported the urgent need for a specialised toilet and shower chair which has since been secured. Additional staff training is planned and communication booklets are considered. Planning of care and facilities should prioritise inclusion of all children and young people. Staff should be empowered with the appropriate training, enabling them to deliver best possible care to all young people and families, ensuring their disability is not perceived as a barrier. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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