Family members' experience of familial amyloidotic polyneuropathy disease - an infernal struggle and a fact of life

Authors
Citation
E. Jonsen, Family members' experience of familial amyloidotic polyneuropathy disease - an infernal struggle and a fact of life, J ADV NURS, 31(2), 2000, pp. 347-353
Citations number
43
Categorie Soggetti
Public Health & Health Care Science
Journal title
JOURNAL OF ADVANCED NURSING
ISSN journal
03092402 → ACNP
Volume
31
Issue
2
Year of publication
2000
Pages
347 - 353
Database
ISI
SICI code
0309-2402(200002)31:2<347:FMEOFA>2.0.ZU;2-M
Abstract
Familial amyloidotic polyneuropathy is a fatal, hereditary, systemic, progr essive amyloidosis. No previous qualitative study of the family members' ex perience of the disease has been published. The purpose of this phenomenolo gical study was to understand the lived experience of family members whose nearest and dearest suffered from familial amyloidotic polyneuropathy. In-d epth interviews were conducted with six family members. The analysis of the data was inspired by Colaizzi's method. Two major theme categories, diffic ult to accept and forced to accept, emerged from the interviews. Implicatio ns for nursing practice, such as genetic counselling and support, are discu ssed.