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New research will identify the barriers to palliative care

Author: Leila Hawkins
14 June 2017

Keech Hospice Care is funding a three year research project to explore the barriers that prevent families from accessing palliative care services.

The study, the first of its kind in the UK, will be carried out by the University of Bedford’s Institute for Health Research. It will be undertaken by Georgina Constantinou, a PhD student from the university. She explained:

“Children’s palliative care is an area where research is limited, so this study is incredibly worthwhile. It differs vastly from adults’ because there are challenges specific to younger people’s development that reinforces the need for this type of research.”

“I will be working with families at Keech Hospice Care  which supports life-limited and terminally ill children from Bedfordshire, Hertfordshire and Milton Keynes, and studying the experiences of parents to find out if needs are being met and to what degree improvement is needed.”

Liz Searle, Chief Executive Officer at Keech Hospice Care, said this research is an important move for them.

“Taking on a research student to better understand how palliative care works in the UK is an innovative step for us. As a leading hospice, it is key we generate new knowledge to share at a national level. This research will help Keech Hospice Care to review what we can do better as we work to understand how best to care for children with complex conditions as they live longer.”

Jen Carter, a mother from Hertfordshire, is backing the research as it will investigate if the needs of her son are being met. She said:

“My son Jacob, 4, has Hurler Syndrome. Like many families, we are struggling to get the care needed and we are exhausted. We have been trying to get money to get a carer at home to give us a small break. It is important we employ someone Jacob is comfortable with as he has extreme anxiety but we are just coming up against a brick wall to get the support.”

“I am delighted this research is being undertaken and hope it will shine a light on problems families like mine are facing every day. Palliative care can transform people’s lives and the support you get is something every family with a child like Jacob needs”.

For more information visit Keech Hospice Care

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