What is it about?
This paper is about the analysis we undertook of the videos that parents of children with complex health care needs made to show the challenges they face undertaking highly complex nursing care of their children. The parents made the videos to both raise awareness of the clinical type roles that they undertake and to inform commissioners of services, professionals and politicians that more support is needed. The videos are mostly informal and quite short and provide snap shots into daily life and the difficulties of providing 24 hour care for children with high levels of health needs. The videos form part of a campaign by WellChild, https://www.wellchild.org.uk a UK charity that aims to support families so that their children with very complex health care needs can be cared for at home.
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Why is it important?
Children with complex health care needs include children who need technological support to breathe and who need support for feeding and other aspects of daily living. Many of the children require lots of medicines to keep them well and need lots of support such as physiotherapy support. With their parents providing a lot of their care, the children would have to be in hospital all the time and this is very disruptive of family life. The children have a right to be a part of their family and to engage in family life at home.
Perspectives
This topic is important to me as so many parents are struggling to manage their child's care because they do not have sufficient professional support or the services available are not adequate. The parents are highly skilled in the care they provide their children and they do a wonderful job and they want their child to be at home. However, they are often exhausted and overwhelmed by the responsibility and the fact that when their formal support structure fails (e.g a night carer doesn't turn up because they are ill) that the parents have to pick up the responsibility for caring for their child over night. This happens so frequently that parents are exhausted as they have to carry on caring the following day.
Professor Bernie Carter
Edge Hill University
Read the Original
This page is a summary of: Parent-Driven Campaign Videos: An Analysis of the Motivation and Affect of Videos Created by Parents of Children With Complex Healthcare Needs, Comprehensive Child and Adolescent Nursing, September 2017, Taylor & Francis,
DOI: 10.1080/24694193.2017.1373160.
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