Issues for parents caring 24/7 for children with complex care needs

A new research report has been published by the charity WellChild which explores parents’ experiences of managing care for children with complex care needs throughout the 24-hour day.

Calgary photojournalist Christina Ryan and her daughter Emily Pitchers, 16, who has numerous medical conditions including Down Syndrome, epilepsy and severe developmental delays. Leah Hennel, Calgary Herald.

University of Hertfordshire 20 January 2017

The study Caring for Children ’24-7’ was undertaken by Mark Whiting, WellChild Professor of Community Children’s Nursing at the University of Hertfordshire. It 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.

Children with complex needs
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. The 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.

Dramatic growth of community care
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.

Source University of Hertfordshire via MedicalXpress

Caring for children ‘24-7’ – The experience of WellChild Nurses and the families for whom they are providing care and support, Mark Whiting. Centre for Research in Primary and Community Care. January 2017 University of Hertfordshire and WellChild

Support requirements of parents caring for a child with disability and complex health needs, Mark Whiting. Nursing Children and Young People 2014 May;26(4):24-7. doi: 10.7748/ncyp2014.05.26.4.24.e389.

Also see
Caring for special-needs children at home brings high cost
11 Things Parents With Children In Wheelchairs Have To Deal With in Huff Post Impact Canada
With too few nurses for kids’ home care, parents push for action in The Boston Globe
An intimate view of the ‘super parents’ of chronically ill children in CNN Health
Parents able to become care ‘experts’ with nurse help in Nursing Times
Justice Dep’t suing Florida over medical care of disabled kids in Digital Journal
U.S. special-needs families face complex retirement planning in Reuters Money
Children with care needs deserve joined-up action to cut delay in The Guardian

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