Specialist nurses are vital in helping the parents of young patients with complex conditions to become experts themselves in managing their children’s care needs, say researchers.
A new charity report has revealed the findings from pioneering research into the issues facing parents caring 24/7 for children with complex care needs when accessing support out of hours.
“Services need to be planned so these families know they can always access support”
WellChild has today published findings from the study by a community nursing academic into the experiences of parents in managing care for children with complex care needs through 24-hours.
It found data on children with complex needs was not systematically collected across the NHS, which presented “significant challenges” to the planning of appropriate professional support for parents.
The study “shines a particular light” on the difficulties that parents face out-of-hours when access to professional support can be a particular challenge, said the charity, which financed the work.
It provides significant new insights into an under-researched area of care and identifies the key drivers for parents when seeking out of hours support, according to WellChild, which provides a specialist nursing service for children with long-term conditions.
Since 2006, the charity has provided specialist nurses who work with families to ensure children with complex care needs can leave hospital and return home. There are currently 30 WellChild in the UK.
In addition, the study report – titled Caring for Children ‘24-7’ – makes a series of recommendations on the role that WellChild might play in influencing future provision of out of hours support for children with complex care needs.
It found that, with the support of WellChild nurses, parents became experts in their child’s care. The parents placed a high value on the role of their nurse and many identify them as their key worker.
Parents reported the effectiveness with which their nurse took on advocacy for their child and family and worked in partnership with them, helping them to take control of the situations they encounter.
The charity’s report said such factors impacted positively on parents’ ability to co-ordinate the care of their child throughout 24-hour day. As a result, parents developed good anticipatory planning skills that also reduced their need to seek professional advice and support out of hours.
Study author Mark Whiting, WellChild professor of community children’s nursing at the University of Hertfordshire, said: “I believe that this study adds significantly to what we know about how caring for a child with complex health needs impacts upon the lives of families in the community.
“Through the expertise and experience of the WellChild Nurses Programme, WellChild is uniquely placed to influence the commissioning and provision of care for families of children with the most complex of health needs in the community,” he said.
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“Services need to be planned so these families know they can always access support at times and of a nature suitable for their child’s specific needs,” added Professor Whiting, who is also a consultant nurse for children with complex health needs at Hertfordshire Community NHS Trust.
Linda Partridge, WellChild director of programmes, said: “Professor Whiting’s study powerfully demonstrates the impact of someone like a WellChild nurse in empowering parents to plan and be confident in their own instincts, so they can effectively manage their children’s care, even when the child’s condition shows signs of deteriorating.
“However, we cannot underestimate the importance of having recourse to the appropriate professional support at all times, even if it is only to provide reassurance that the parent is taking the correct measures,” she said.