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Personal resuscitation plans for disabled children: an evaluation of parental views
  1. M Kightley1,
  2. W Whitehouse2,3,
  3. T Wolff4
  1. 1Paediatric Bereavement, Nottingham University Hospitals NHS Trust, Nottingham, UK
  2. 2Paediatric Neurology, Nottingham University Hospitals NHS Trust, Nottingham, UK
  3. 3School of Clinical Sciences, University of Nottingham, Nottingham, UK
  4. 4Community Child Health and Neurodisability, Nottingham University Hospitals NHS Trust, Nottingham, UK

Abstract

Aims Locally, children with severe neurodisability who are at risk of life threatening events have a personal resuscitation plan (PRP). The authors have previously presented the development and implementation of PRPs,1 and the views of health professionals on their usefulness,2 to the Royal College of Paediatrics and Child Health meetings. This report is of a service evaluation of the PRP system from the parent's perspective.

Methods A questionnaire was either posted to or completed by telephone with the parents of surviving children with a PRP, identified from a central audit file.

Results 10/17 parents completed a questionnaire. Five parents had found it easy to make a PRP with their child's consultant; five had found it difficult. All parents would recommend having a PRP to other families. No parents wanted to change the PRP format. Two parents reported that the PRP had helped in an emergency. Comments included: “It's important to plan for the future, good to discuss our views, have detailed information, choose the best plan.” “It gives us more control, avoids misunderstandings.” “He will get the right care straight away.”

Conclusion Although it is upsetting, parents want to discuss what will happen if their child has a life threatening event. They want to understand the options and be involved in making a plan for best care. The current PRP format is acceptable. Having these decisions documented is empowering for families and gives peace of mind.

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