Charity launches new guides to help care for children at the end of life

Categories: Care and Featured.

Together for Short Lives has launched two new end of life guides for professionals and families.

Caring for a Child at End of Life for Professionals and the supplementary Caring for a Child at End of Life for Families have been developed in collaboration with palliative care experts and bereaved parents who shared their personal end of life experiences for the family-focused resource.

Caring for a Child at End of Life for Professionals is a practical toolkit for all practitioners providing end of life care to babies, children and young people. It sets out key standards and goals for good practice alongside links to useful sources of information, legislation and regulations. It is aimed at supporting all professionals working with children at end of life in hospital, hospices and in the community, providing guidance from care before death to bereavement support.

The professional version of the guide also includes a series of practice prompts. These are easy to share, digestible information sheets that can be used in staff training.

The charity’s family guide, Caring for a Child at End of Life for Families, is a supportive supplementary resource, guiding families through their child’s end of life journey, helping them to prepare themselves for what should happen. Professionals are encouraged to share and work through it with families when a child is approaching the end of life.

“There is currently little guidance available for caring for children at end of life, and so we hope that practitioners will use this important resource and share it with colleagues across the sector” said Lizzie Chambers, Director of Programmes at Together for Short Lives, and author of the two guides.

“The accompanying family booklet contains experiences from families and we hope that care teams will share it with parents and carers and talk through the sections with them at an appropriate time and pace for them.”

Lorna, mum to triplet daughter Essie who died in 2017 at 18 months old, contributed to the family guide. She said: “I feel passionate that we should talk more openly about baby and childhood loss, I hope that the release of this new guide will empower families to talk openly about their experiences to help other families facing the unimaginable.”

Together for Short Lives hopes that practitioners will find both resources invaluable. “These guides aim to ensure that professionals are up to date with the latest statutory guidance and best practice so that any professional caring for a dying child can provide the best care possible to families at the very worst of times” Lizzie added.

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