Families of children with rare disorders have many experiences in common, as well as special problems related to the specific disorder. This paper presents Frambu Health Centre and the family-focused services offered to patients with bladder exstrophy during the first information and treatment course arranged for this group at the Centre. Main areas of concern as reported by the families are presented.
References
1.
Chisholm TC, McParland FAExstrophy of the urinary bladder. In: Ravitch M, ed. Pediatric surgery. 3rd ed. Chicago: Year Book Medical Publishers, Inc., 1979:1239-54.
2.
Sommerschild HC, Knutrud O.Bladder exstrophy. Z Kinderchir1971;9:404-12.
3.
Lattimer JK, Hensle TW, MacFarlane MT, Beck L., Braun E., Esposito Y.The exstrophy support team: a new concept in the care of the exstrophy patient . J Urol1979; 121:472-3.
4.
Storhaug K., Vandvik IHFrambu Health Centre: Promoting family focused care for disabled children . Int J Rehabil Res1983;2:175-82.
5.
Storhaug K.Aspects of living conditions among groups of disabled children and their families in Norway. Family situation, mothers' health, financial assistance . Soc Sci Med1983;17:1837-45.
6.
Vandvik IH, Ödegaard B.Practical and emotional aspects of soiling in children with anorectal anomalies. Possibilities for prevention and early intervention. Z Kinderchir1981; 33:321-30.
7.
Lattimer JK, MacFarlane MT, Puchner PJMale exstrophy patients: a preliminary report on the reproductive capability . Trans Am Assoc Genitour Surg1979;70:42-4.
8.
Vandvik IH, Seltzer WJEvolution of child psychiatric team-work in a somatic hospital. Psychother Psychosom1984; 41:77-84.
