Cystisk fibros Att vara förälder till ett barn med cystisk fibros

  • Roger Jönsson
  • Karl-Magnus Monikander
  • Jenny Warheim

    Examensarbete: Kandidatexamen


    Background: Cystic fibrosis (CF) is the most common hereditary disease that leads to an early death. Earlier CF was considered as a childhood disease but today the expected age is 50 years. CF affects all the epithelial cells in the body which makes mucus and other body fluids more viscous than normal. The thick mucus leads to among other things respiratory problems and infections of the lungs. Today there is no cure, only medicines that controls the symptoms.

    Aim: To describe parents experiences living with a child with CF.

    Method: The study was carried out as a literature review. The articles were examined by qualitative content analysis.

    Result: The study showed that having a child CF takes a great deal of effort from the parents. The family must adjust to the time consuming daily care of the child. This can lead to a strain relationship between the parents. The uncertain future leads to distress for the parents. It is important that the contact between the medical care and the family is well functioning in this the nurse has a central role.

    Conclusion: One of the most important tasks the nurse has is to look at the family from an overall point of view. It is important to support the whole family not just the individual with the disease.


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