Family-focused Services for Children with Rare Disorders, Exemplified by Bladder Exstrophy

Author:

Vandvik Inger Helene1,Storhaug Kari1

Affiliation:

1. Division of Child and Adolescent Psychiatry, The National Hospital of Norway and Frambu Health Centre, Siggerud, Norway

Abstract

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.

Publisher

SAGE Publications

Subject

Pediatrics, Perinatology and Child Health

Reference8 articles.

1. Chisholm TC, McParland FA Exstrophy of the urinary bladder. In: Ravitch M, ed. Pediatric surgery. 3rd ed. Chicago: Year Book Medical Publishers, Inc., 1979:1239-54.

2. The Exstrophy Support Team: A New Concept in the Care of the Exstrophy Patient

3. Frambu Health Centre

4. Aspects of living conditions among groups of disabled children and their families in Norway: Family situation, mothers' health, financial assistance

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