Health professionals require more guidance to support children of terminally ill patients

Health professionals require more guidance to prepare and support children when a parent is dying, a new study in the journal Palliative Medicine reports.

In the first study of its kind, researchers from the University of Surrey and the Princess Alice Hospice carried out a review of studies examining the experiences of over 300 health and social care professionals when supporting parents who are dying and preparing their children for what is happening.

After analyzing responses, researchers identified a number of key barriers preventing health professionals connecting with parents to help them support their children. Many perceived themselves to be lacking relevant skills, such as age-appropriate communication and counseling, preventing them from engaging with parents and children. Fear of making things worse for the children and causing distress in families by saying the wrong thing was also a concern amongst health professionals.

It was also found that some professionals, to manage the pain of over identifying with parents and children, developed distancing behaviors such as focussing on the physical care of the patient and avoided talking to the parents about their children.

Approximately 23,600 parents with dependent children died in the UK in 2015. Previous research in this area shows that if not prepared for parental death, or supported afterwards, children whose parents die are more likely than their peers to have higher levels of referral to psychiatric outpatient and specialist services, and experience absence from school.

To overcome this health professionals have called for more guidance and training in this area and for patient records to 'flag up' the presence of young children in the immediate family.

Lead author of the paper, Penny Franklin, a post graduate researcher from the University of Surrey, said: "Losing a parent at any age is a devastating experience however as a young child, unsure of what is happening, the occurrence can be particularly traumatic and can have a long-lasting impact.

"More guidance and training is needed by health professionals who need to hold discussions with parents about preparing their children for their Mum or Dad's death. Such discussion - when conducted well - can make this devastating situation more bearable for families. Support systems also need to be in place for professionals delivering such care allowing them to manage their own emotions.

"The UK needs to look to countries like Sweden, where it is mandatory for nurses to involve children in their dying parents' care. In the UK, there is no such requirement. Disappointingly NICE guidelines only generally acknowledge supporting patients' children resulting in them being at risk of being overlooked or forgotten by the system."

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