Research to reveal true situation of end of life care

A mum from Hertfordshire is backing research which will investigate if seriously ill children’s care needs are being met as she battles to get the support she needs for her life-limited son.

Jen and Jacob Carter

Jen Carter, 27, from Baldock, said she’s delighted Keech Hospice Care, together with the University of Bedfordshire’s Institute for Health Research, is funding first of its kind research to explore the barriers that block families from accessing palliative care services.

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

“I’m 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,” said Jen.

The research will be carried out by Georgina Constantinou, a PhD student from the University. Georgina, who is from Bedford, will be based at Keech Hospice Care in Luton.

“Children’s palliative care is an area where research is limited so this study is incredibly worthwhile,” said Georgina. “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’ll 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 like Jen Carter to find out if needs are being met and to what degree improvement is needed,” said Georgina.

Liz Searle, Chief Executive Officer at Keech Hospice Care, said this research is a first for the charity.

Liz Searle, Gurch Randhawa and Georgina Constantinou
“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’s 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.

“We are pleased to be working in partnership with the University of Bedfordshire this Children’s Hospice Week, as we can only be really good at what we do if we have the best and most up-to-date evidence so we can make sure no-one has to face a life-limiting illness alone,” said Liz.

Gurch Randhawa, Director of the Institute for Health Research at the University of Bedfordshire, said the research is crucial. 

“This PhD is vital as it is one of only a few studies in the UK to explore the perspectives and experiences of parents of children receiving end of life care.

“Applied research such as this enables us to work with our research partner, Keech Hospice Care, to make improvements to services,” said Gurch.

The research project will span a period of three years with findings released at key stages.