Experience Beyond Cancer
Relatives' experiences of care given to family members who have died from cystic fibrosis. This qualitative research project sought to describe and understand families' experiences of end-of-life care, both to provide a resource for other families and to enable health services to improve the care they currently offer. Through extensive interviews and letters , the parents of adult children who have died from cystic fibrosis shared their experiences of the care given to their children at end of life. The study also explored whether and how the subject of death and dying was discussed within the family as their child was growing up. The findings will have implications of how palliative care can be delivered to people with non-malignant disease.
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