Parents expertise develops through necessity, not choice - 27 June 2011

I have just been reading an article called "The symptom profile and experience of children with rare life-limiting illnesses: Perspectives of their families and key health professionals" (Forbat, Malcolm, Anderson, Adams, Gibson, Hain & Morley, 2011).

As I read it I am thinking of the many children and families I have cared for over the years; the content of this article is familiar to some of the conversations and experiences I have had.

The article highlights that parents become the experts of their child's illness; "this expertise is developed through necessity, often, rather than choice". Parents have shared with me that the medical team and health professionals often look to them for advice in regard to their child's condition, particularly those illnesses that are rare. This is unsettling for the family as the responsibility sits heavily with them when they would prefer to be gaining expert advice from those responsible for the treatment and care of their child.

The impact on the wider family is recognised in this article, with siblings voicing the love and compassion for their brother or sister and frustration at those who judge people with disabilities. In this particular study siblings stated that they felt they may know more about their brother or sister's condition than their parents realised. "This may be because siblings and parents try and protect each other by limiting how much they talk to each other about the ill child's condition. They also spoke of feeling isolated, and the limitations in the social experiences which stemmed from the needs of the ill child".

"Siblings were often managing a range of complex emotions, at home, and at school and were very aware of how worrying feelings could echo around the wider family system".

Parents often ask the team at True Colours how much information should be shared with siblings or with the sick child themselves about the condition, treatment or prognosis of the illness. We endorse always being honest, but to keep the language and information simple and developmentally appropriate. Often children require a small piece of information, and then they can be encouraged to ask questions they may have about this. When children ask questions it is good to clarify what is being asked, and then to keep the answer simple and honest. It is good to remind ourselves that adults see the 'big picture' of what is happening or what the future may hold, but children tend to live in the moment and are attending to what is happening for them in the here and now.

Children will be led by your own responses, emotions and how you are in 'the moment'. To give children the opportunity to talk or express how they are feeling about the illness, whether that is the sick child, or sibling, is essential in 'listening to hear' what is important and therefore upholding good communication links with your children.

There is no doubt that a child's serious illness impacts on all of the family and that challenging relational dynamics arise at times due to the vigilance and energy required to care for the child who is sick.

With this in mind it is essential to have health professionals who provide support that is beneficial and that helps 'ease' the load on the family. It is hugely important to me in doing the evaluation of True Colours organisation to find out whether this service is actually meeting families needs when there is a sick child. Hearing from children and parents themselves enables us to continue to scope the service provision on what is actually needed, rather than assumed. If you would like to read the above article, you can go to www.cancercare.stir.ac.uk.