Living with a rare disorder: a systematic review of the qualitative literature-Reference-Cited by-同舟云学术

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Living with a rare disorder: a systematic review of the qualitative literature

Published:2017-07-23 Issue:6 Volume:5 Page:758-773
ISSN:2324-9269
Container-title:Molecular Genetics & Genomic Medicine
language:en
Short-container-title:Mol Genet Genomic Med

Author:

von der Lippe Charlotte¹^ORCID,Diesen Plata S.¹,Feragen Kristin B.¹

Affiliation:

1. Centre for Rare Disorders; Oslo University Hospital, Rikshospitalet; P.B. 4950 Nydalen Oslo 0424 Norway

Publisher

Wiley

Subject

Genetics(clinical),Genetics,Molecular Biology

Link

http://onlinelibrary.wiley.com/wol1/doi/10.1002/mgg3.315/fullpdf

Reference64 articles.

1. Mapping the information-coping trajectory of young people with long term illness: an evidence based approach;Anne Sen;J. Doc.,2013

2. Chronic illness and health-seeking information on the Internet;Ayers;Health (London),2007

3. Empowerment of patients: lessons from the rare diseases community;Aymé;Lancet,2008

4. Living with haemophilia and von Willebrand's: a descriptive qualitative study;Barlow;Patient Educ. Couns.,2007

5. Methods for the synthesis of qualitative research: a critical review;Barnett-Page;BMC Med. Res. Methodol.,2009

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3. Rubinstein–Taybi Syndrome Clinical Characteristics from the Perspective of Quality of Life and the Impact of the Disease on Family Functioning;Journal of Clinical Medicine;2024-09-02

4. Assessing the lived experiences of females with phenylketonuria in their health management;Molecular Genetics and Metabolism Reports;2024-09

5. Experiences of quality of life and access to health services among rare disease caregivers: a scoping review;Orphanet Journal of Rare Diseases;2024-08-31

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