Navigating the unknown: A content analysis of the unique challenges faced by adults with rare diseases.

Abstract:

:Living with a rare disease can present unique challenges not shared by individuals with common diseases. A content analysis explored which challenges, in participants' own words, are most prevalent across a sample of individuals ( n = 1157) with diverse rare diseases in the United States. Symptoms, activity limitations, treatments, uncertainty, and companionship support were mentioned most. Differences across the most frequently mentioned codes were found among disease types, gender, income, years since diagnosis, and symptom duration. Results suggest a need for improved medical care to reduce activity limitations, increased awareness, social support, and access to information for people with rare diseases.

journal_name

J Health Psychol

authors

Bryson B,Bogart K,Atwood M,Fraser K,Locke T,Pugh K,Zerrouk M

doi

10.1177/1359105319828150

subject

Has Abstract

pub_date

2019-02-21 00:00:00

pages

1359105319828150

eissn

1359-1053

issn

1461-7277

pub_type

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