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

Journal of Health Psychology
Brooke BrysonMohamed Zerrouk

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.

References

Aug 28, 2001·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·D E Hoffmann, A J Tarzian
Apr 28, 2006·Journal of Health Communication·Lila J Finney RuttenBradford Hesse
Jan 8, 2010·Journal of Genetic Counseling·Robert Klitzman
Mar 30, 2010·Journal of Health Psychology·Phoenix K H Mo, Neil S Coulson
Oct 14, 2010·Journal of Personality and Social Psychology·Mark D SeeryRoxane Cohen Silver
Jan 20, 2012·Journal of Health Psychology·Kathleen R BogartMatthew S Joffe
Apr 15, 2014·Journal of Advanced Nursing·Moira StephensChristopher F C Jordens
May 17, 2014·Journal of Clinical Epidemiology·Mark E GlickmanMark R Schultz
Aug 29, 2014·Disability and Health Journal·Gunilla JaegerBritta Berglund
Mar 26, 2016·Orphanet Journal of Rare Diseases·Caron MolsterHugh Dawkins
Dec 8, 2017·Orphanet Journal of Rare Diseases·Kathleen R Bogart, Veronica L Irvin

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Citations

Jan 24, 2021·Orphanet Journal of Rare Diseases·Miram K DeppingBernd Löwe
Apr 23, 2021·Psychology & Health·Marla MunroKathleen R Bogart

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