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What has the Guide to Children’s Palliative Care ever done for us?

News and comment

In June 2018, we published the fourth edition of the Guide to Children’s Palliative Care, a resource that’s been referred to as the “industry bible”. We’d like to know whether that’s still the case. Do professionals across the globe still turn to the Guide, and if they do, how do they use it?

Changing hearts and minds

One of the key aims of the Guide is to be an advocacy tool, promoting children’s palliative care to all professionals so they can better understand the value of a children’s palliative care approach. Given the growing numbers of babies, children and young people with complex medical needs there will be difficult treatment decisions being made in NICUs and PICUs across the country by a range of different health professionals. It’s perhaps become a hackneyed phrase, but the care of children with life-limiting conditions really is everybody’s business. We’d love to hear whether the Guide has helped you raise awareness of children’s palliative care.

Using the definitions and descriptions

The Guide aims to give clarity on what children’s palliative care is and to further cement the definition and the four categories of life-limiting or life-threatening illness. These are such important fixtures for those of us who work in the sector, so we want to learn how professionals use them in practice, and how they’ve adapted them for their own use.

Service planning and delivery

The second section of the Guide is focused on the general principles of planning and providing a children’s palliative care service. It focuses on 6 key elements of service provision describes how a children’s palliative care service integrates with other local services for children. We have linked key standards and goals from our Care Pathway with the corresponding sections of the NICE Guideline on End of Life Care for Infants, Children and Young People. Has this section of the Guide been useful to you?

Workforce, education and training

Workforce challenges are one of the key issues facing children’s palliative care – how to recruit, retain, support and educate professionals from medical, nursing and social care backgrounds. Does our summary of these critical workforce issues resonate with your experience?

Research and evidence-based practice

As well as giving an overview of the current state of the field, this edition of the Guide advocates for the next phase of its development. Unfortunately, the evidence base has not kept pace with the developments in clinical provision and practice of children’s palliative care. That’s why we’ve devoted space in the Guide to discuss research and the need for future development of evidence-based practice. We’d like to know whether this section has been helpful for you in terms of supporting the future of children’s palliative care practice?

Have your say

We’re really keen to find out about the impact the Guide has had and how we might develop similar resources in the future. If you’re a health or social care practitioner who’s used the Guide, please complete our short survey.

Lizzie Chambers is Director of Research and Programmes at Together for Short Lives and author of A Guide to Children’s Palliative Care.

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