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Family members’ experience of familial amyloidotic polyneuropathy disease — an infernal struggle and a fact of life

Authors


Elisabeth Jonsén RNT Doctoral Student, Department of Medicine, Gastroenterology Section, Umeå University Hospital, S-901 85 Umeå, Sweden. E-mail: elisabeth.jonsen@nurs.umu.se

Abstract

Family members’ experience of familial amyloidotic polyneuropathy disease — an infernal struggle and a fact of life

Familial amyloidotic polyneuropathy is a fatal, hereditary, systemic, progressive amyloidosis. No previous qualitative study of the family members’ experience of the disease has been published. The purpose of this phenomenological study was to understand the lived experience of family members whose nearest and dearest suffered from familial amyloidotic polyneuropathy. In-depth interviews were conducted with six family members. The analysis of the data was inspired by Colaizzi’s method. Two major theme categories, difficult to accept and forced to accept, emerged from the interviews. Implications for nursing practice, such as genetic counselling and support, are discussed.

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