This article discusses the need for person-specific planning for the increasing numbers of disabled children with life-limiting and life-threatening conditions. It describes the system developed in Nottingham for this client group to have a family-held personal resuscitation plan, (PRP) which is developed with the child and family by their lead paediatrician. The PRP is an emergency medical care plan which supports the provision of the most appropriate level of intervention for the child whether they are at home, school, short break unit or hospital. The PRP template is presented with advice on implementation and case examples. Feedback from families, medical and nursing staff is that PRPs are useful and empowering. The system supports timely discussions about appropriate care in an emergency and the communication of decisionsmade jointly by the child, family and medical team to all concerned. A flexible and person-specific PRP stating what interventions to do such as airway clearance, facial oxygen, trial of bag and mask ventilation is preferable to a do not attempt resuscitation form which is an 'all or nothing system' and can seem very negative to families. A PRP in the home can support appropriate action from local rapid response teams set up to review unexpected child deaths.
Children with severe disability often have difficulties with secretion clearance leading to recurrent lower respiratory tract infections and prolonged hospital admissions. A community respiratory physiotherapy service was developed for this client group, including a rapid response for acute respiratory illness, and an evaluation was undertaken, comparing admissions and bed-days in hospital for respiratory tract infections, emergency admissions to hospital for any cause, and admission costs for each child for the 12 months before to the 12 months with the service.Thirty-four children aged 1 to 19 years (median 5) were eligible for the “before and after” evaluation at 28 months; most had severe cerebral palsy 22 (65%), and there were also eight (23%) children with neurodegenerative and four (12%) with neuromuscular conditions. Admissions for respiratory tract infection fell from 43 to 25 (p<0.05), respiratory admission bed-days fell from 383 to 236 (p<0.01), total non-elective admissions fell from 64 to 40 (p<0.01), with admission cost savings of GBP 78,155 (52%) per annum.This small study suggests that a community respiratory physiotherapy service can reduce hospital admissions and bed days for disabled children. The admissions cost savings have enabled the service to “pay for itself”.
AimsTo review the use and monitoring of home oxygen in children with disability for palliative and non-palliative care purposes.MethodThe caseload of a team of community nurses serving children with severe disability was reviewed to establish numbers and details of children on home oxygen. The monitoring arrangements according to community nurses were compared with parents' perception of monitoring and parameters ascertained by phone call.ResultsThe caseload was 77 children with neurodisability aged 3 months–18.5 years. 15 children (eight females) with age range 15 months–17 years (mean 8 years) had been receiving home oxygen in the past 12 months. Two children had neurodegenerative conditions, 13 had severe static neurodisability. Five children were receiving oxygen for symptomatic relief as part of palliative care: four continuously and one intermittently. Three other children were receiving continuous oxygen: one for chronic neonatal lung disease and two for upper airway problems causing recurrent cyanotic episodes. Seven others were receiving intermittent oxygen: five for treatment of hypoxia during recurrent acute lower respiratory tract infections, one for respiratory depression associated with seizures and one for potential emergencies occurring during school transport. All nursing records described the oxygen treatment in detail with appropriate monitoring arrangements. However, in four cases (25%) the indications for oxygen and the monitoring actually being used were very different according to parents.ConclusionsThere were several discrepancies between the reasons for home oxygen and the target oxygen saturations according to community nurses' notes and parents' understanding. Monitoring arrangements were appropriate. No children had satisfactory written care plans and it was not recorded whether potential hazards of home oxygen had been discussed. Oxygen is a prescription treatment with some significant safety implications. Indications for its use in the palliative or non-palliative setting should be clear. Following this audit a communication sheet was devised, including indications for oxygen therapy, monitoring arrangements, information and support given.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.