Family response to cystic fibrosis.

The effects of cystic fibrosis on 50 Victorian families with one or 
more affected children were examined in a study carried out between 
August 1972 and February 1973. The social and emotional problems experienced 
by family members, particularly the patients and mothers, are reported on. 
At all ages, socially embarrassing symptoms and awareness of being different 
create major problems for the patient. The uncertainty of prognosis and 
doubts about the prospects of employment are specially relevant for the 
teenager. It is suggested that the patient be given ample opportunity, 
from early adolescence onward, to discuss all aspects of his disease, 
and that more appropriate provision should be made for the total 
care of adult patients. Many problems, such as depression, feelings of 
isolation and the physical demands of constant treatment, which the parents 
of children with cystic fibrosis experience, are probably similar to those 
confronting parents of other chronically ill and handicapped children. But special 
difficulties stem from the genetic basis of cystic fibrosis and from 
the knowledge of an eventually fatal outcome. The roles of professional 
members of the medical team are touched on, particularly in relation 
to genetic counseling and the provision of practical and emotional support 
to parents. Comments are made on the establishment of lay organisations. 
The financial strain associated with obtaining regular medical attention was looked 
at, and suggestions are made for minimizing the economic problems of 
certain vulnerable families. 