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Survivor’s guilt: Growing up with cystic fibrosis in the family

The need for information and support for siblings - Sally’s story.

This story describes the time when Sally learnt about cystic fibrosis, knowing her deceased brother had the condition. It shows how a genetic condition can have implications for relatives and it highlights the importance of receiving accurate information.

Toolkit

  • reflection Point 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 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 Quotes to reflect upon

    "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

  • Further Information Further Information

    • The Cystic Fibrosis Trust (www.cftrust.org.uk) 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 (http://www.sibs.org.uk) 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 - http://www.ghr.nlm.nih.gov/condition=cysticfibrosis
    • UK National Library for Health, Genetic Conditions Specialist Library website: CF briefing - http://www.library.nhs.uk/genepool/ViewResource.aspx?resID=83901&tabID=290&catID=8930

How does this story relate to professional practice?

  • cogs Nursing Competencies

    [We have linked this story to the Nursing Competences in Genetics (NCG) for nurses, midwives and health visitors. Further information on the competence frameworks can be found here]

    Although this story does not describe any interaction with a health professional, it is an important reminder of how professionals have a role / duty to consider what they are about to say to people at risk of a genetic condition.

    This story does tell us a little about the sensitive area of informing people and how this can be complex issues for families for many reasons. Although the responsibility to tell children / young people or siblings about their family history rests with parents, the nurse can have a valuable role in offering resources to parents on how to discuss these subjects with their children and relatives. Being able to offer information, pass on useful resources to families can be helpful to them – allowing them to be aware of existing material to use them when they are wanted (NCG 1 and 7).

  • cogs Midwifery Competencies

    Content relating to the midwifery competencies in genetics will appear here shortly.

  • cogs Learning Outcomes for GPs

    We have linked this story to the learning outcomes for GPs listed in the Royal College of General Practitioners Curriculum Statement 6 ‘Genetics in Primary Care’, which describes the knowledge, skills and attitudes that a GP requires when relating to patients and families with genetic conditions. Further information on these learning outcomes can be found at: www.rcgp-curriculum.org.uk/PDF/curr_6_Genetics_in_Primary_Care.pdf

    Sally very much wanted to find out about her brother’s CF and what the genetic implications were for her, particularly with respect to having her own family in the future. GPs need to be aware that a genetic diagnosis in an individual may have implications for the management of other family members who may ask for a consultation (GP-7c).

    Sally and her parents received no counselling or support after her brother’s death and Sally felt she could not discuss the subject as she did not want to upset them. It is evident that the family would have not only benefited from some support to help them deal with the impact and the consequence of CF in their family (GP-1i), but also from a referral to genetics services where they could have obtained specialist help and advice (GP-1e;GP-1g).

    With no-one else to ask, Sally enquired about CF and inheritance during a biology lesson at school but was treated very insensitively by the teacher. For a young girl who had always wanted to have children, this episode was very upsetting for Sally and she vowed she would not talk about it again. This clearly had a significant psychological impact on Sally and she talks about feeling ‘helpless’ about not being able to access information about her brother’s condition and the possible implications for her (GP-6b). Sally would have found it helpful to talk to someone about the ‘survivor’s guilt’ she felt. This gives an insight in to some of the emotions she experienced as a result of the genetic diagnosis in her family, particularly around the guilt of surviving and enjoying her life (GP-8d).

  • cogs Learning Outcomes for Medical Students

    Content relating to the learning outcomes in genetics for medical students will appear here shortly.

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