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Points for Reflection

Can you think of reasons why parents would and would not want to talk to their children about genetic conditions in the family? Use cystic fibrosis (an autosomal recessive condition) as an example.

Consider the taboo that surrounds the issue of talking about a dead child with others outside the family.

Activities

1. What sort of information/ resources could a nurse pass on to the family to help them learn and understand about cystic fibrosis and their own risk?

2. What could the nurse offer to parents in case they might want to tell their children about their own risk?

3. Discussthe role hospital-based health care staff might play in supporting siblings of children with life-limiting conditions.

Quotes

"When I was growing up, I never felt I could really ask my parents about him, as I knew they would get very upset if they did."

"I told her that my brother had died with cystic fibrosis and that I thought that was an inherited condition. I was expecting her to be interested in me and to take some time to explain the condition and how it was passed on. Her response instead was one I have never forgotten. She said in a jokey way ‘Well, you’d better not have any children then’."

Further information

The Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis (CF).

www.contactafamily.org.uk: This UK national charity (Contact a Family) has produced useful literature to help parents tell their children about different medical conditions.

Sibs is the UK charity for people who grow up with a disabled brother or sister.

The webpage www.special-needs-kids.co.uk/siblings.htm provides information for siblings of children with special needs, including a link to useful literature resources.

US National Library of Medicine, Genetics Home Reference: Cystic Fibrosis

UK National Library for Health, Genetic Conditions Specialist Library website: CF briefing
Location: The Stories
Transcript

You can download the full transcript here

Survivor’s guilt: Growing up with cystic fibrosis in the family
The need for information and support for siblings - Sally’s story

My brother John was born with cystic fibrosis and died when he was one year old. When I was growing up, I never felt I could really ask my parents about him, as I knew they would get very upset if they did. My parents received no counselling after my brother’s death and their sense of loss was always evident.

At the time of going to secondary school, I was very curious about cystic fibrosis and wanted to learn about it. I did not have access to any information materials and all I had heard was that it was inherited and that people who had this condition died at a young age. One day in biology class, when we were doing ‘inheritance patterns’, the teacher asked if we knew any people in our families who had inherited an illness. I felt excited about the possibility of being able to find out more about cystic fibrosis so I put my hand up. I told her that my brother had died with cystic fibrosis and that I thought that was an inherited condition. I was expecting her to be interested in me and to take some time to explain the condition and how it was passed on. Her response instead was one I have never forgotten. She said in a jokey way ‘Well, you’d better not have any children then’. The other children laughed. I felt very small and very hurt. I talked about something that I had never spoken about before, and decided I wouldn’t talk about again. I had always wanted children, so the idea that this might not be OK for me was very upsetting. What I wanted her to do was to say she was sorry to hear about my brother, and that if I liked, she would explain the genetics of cystic fibrosis to me after class.

It wasn’t until I went to University that I was able to access information about the genetic implications for me of cystic fibrosis. It would have been so good to have these questions answered as a child; to have someone explain things and let me know that when I was older there would be people I could talk to about having children of my own. It would also have been good to talk to someone about ‘survivor’s guilt’ and to be encouraged to have a good time living, even if my brother didn’t get to do that. As a child, I felt helpless about not being able to get access to information and know this is still the case for many siblings.