End of life care for infants, children and young people with life-limiting conditions: planning and management

Recommendation ID: NG61/3
Question: Emotional and psychological support and interventions:- What emotional support do children and young people with life-limiting conditions and their parents or carers need, and how would they like these needs to be addressed?
Any explanatory notes (if applicable): Why this is important:- Previous UK studies, such as The Big Study for Life-Limited Children and their Families from Together for Short Lives, have explored broad themes of psychological support needs. However, no studies have tried to understand psychological difficulties using standardised measures of psychological and relationship distress, or looked at what families want from psychological therapies.
Before research into effective interventions can be carried out, the following aspects of psychological difficulties need to be better understood:
- their range (for example low mood, worry, stigma, conflict in family relationships, avoidance, and distress about medical procedures)
- their severity (from mild long-term low mood to severe depression with suicidal thoughts)
- their context (for example socioeconomic status, and communication or mobility needs).

Source guidance details

Comes from guidance: End of life care for infants, children and young people with life-limiting conditions: planning and management
Number: NG61
Date issued: December 2016

Is this a recommendation for the use of a technology only in the context of research?	No
Is it a recommendation that suggests collection of data or the establishment of a register?	No
Last Reviewed	31/12/2016