• The psychological issues surrounding a dying child and their family are far reaching and complex
• Professionals caring for these families need to consider these issues to help their understanding of what the families may be feeling and enable appropriate support to be given
• Resources for support include the Specialist paediatrician and community paediatrician, the clinical nurse specialists involved with the child as well as the local paediatric palliative care team or the local children’s hospice
• Problems and priorities will vary from family to family but a broad outline of some of these issues is given below:

What happens when a child becomes ill?

Possible Issues for parents

• Diagnosis / Dealing with bad news
• Parent takes on new role: now responsible for sick child
• Maintaining aspects of everyday life
• Explaining to siblings and extended family
• Giving other siblings attention
• Giving partner support and attention
• Financial implications of not working while looking after child

Concerns re: responsibility for illness?

• problem during pregnancy
• problem during birth
• problem with genes

Taking care of child

• short term/ long term
• knowledge of illness
• recognising important symptoms, ignoring others
• allowing multiple professionals into life and family home

Leaving child in care of others

• will anyone take child on
• will parent feel able to leave child
• will schooling be possible
• need for parental ‘self care’

Possible Issues for Child

• symptoms
• restricted lifestyle
• feeling abnormal
• cause of worry to others
• guilt
• relationship with other children different
• facing prognosis
• educational concerns

Possible Issues for Siblings

• jealousy/ resentment
• guilt re: above
• guilt re: responsibility for sibling’s illness
• concern re: own health
• responsibility for care of sick sibling and supporting parents

Providing support

• Give the family time and be ready to listen when they are ready to talk
• Supporters will be chosen by the family not by the professionals- some families will talk to nurses, teachers, clergy, other parents, or domestic staff
• Professionals should offer help on a regular basis.
• Honesty is usually helpful if it is offered gently and you are sure of the question being asked
• If you do not know the answer it is better to explain this
• Do not be afraid to allow the child to talk but check with parents that they are aware and comfortable with this