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Research highlights issues for parents caring for children with complex care needs 24/7

Caring for children ‘24-7’ - The experience of WellChild Nurses and the families for whom they are providing care and support, by Mark Whiting

By Callum Campbell · January 19, 2017

Today, WellChild publishes a study undertaken by Mark Whiting, WellChild Professor of Community Children’s Nursing at the University of Hertfordshire, which explores parents’ experiences of managing care for children with complex care needs throughout the 24-hour day. The study ‘Caring for Children ’24-7’: the experience of WellChild Nurses and the families for whom they are providing care and support’ provides significant new insights into this under-researched area of care and identifies the key drivers for parents when seeking out of hours support. It also 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.

The study found that, with the support of WellChild Nurses, these parents become experts in their child’s care. They place a high value on the role played by the WellChild Nurse and many identify the WellChild Nurse as their key worker.

Parents reported the effectiveness with which their WellChild Nurse takes on advocacy for their child and family and works in partnership with them, empowering parents to take control of the situations they encounter.

All of this impacts positively on parents’ ability to coordinate the care of their child throughout 24-hour day. Parents develop good anticipatory planning skills and this reduces their need to seek professional advice and support out of hours.

When parents do seek professional support out of hours, the study identified that their actions were governed by the following four key questions:

  1. What time of day is it? When to call?
  2. Why am I looking for support/help/advice? – Why call?
  3. Who do I think is the right person to give me that support/help/advice? – Who to call?
  4. How do I get in touch with that person? – How to call?

Professor Whiting’s study reported that data relating to the growing population of children with complex needs is not systematically collected across the NHS, and this presents significant challenges to the NHS in planning appropriate professional support to parents.  A number of these issues have already been highlighted by WellChild in the #Notanurse_but campaign, but this study shines a particular light on the difficulties which parents face out-of-hours when access to professional support can be a particular challenge.

Professor Whiting 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. 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.”

Despite dramatic growth of Community Children’s Nursing teams in the past 30 years, there is tremendous variability of service provision from one area of the UK to another. The study demonstrates how, since its introduction in 2006, the WellChild Nurse Programme has made a real difference for the families of children with complex care needs.

WellChild Director of Programmes Linda Partridge 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.”

Professor Mark Whiting is WellChild Professor of Community Children’s Nursing at the University of Hertfordshire. This is the first, and as yet, only post of it’s kind in the UK and is combined with Mark’s work as Consultant Nurse for Children with Complex Health Needs in Hertfordshire Community NHS Trust.