Whalley, S;
McManus, IC;
(2006)
Living with primary ciliary dyskinesia: a prospective qualitative study of knowledge sharing, symptom concealment, embarrassment, mistrust, and stigma.
BMC Pulmonary Medicine
, 6
, Article 25. 10.1186/1471-2466-6-25.
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Abstract
Primary ciliary dyskinesia (PCD) is a chronic respiratory disease for which there is little psycho-social research and no qualitative studies of individuals living with the condition. A questionnaire-based survey in 2003 found evidence of stigmatisation in some individuals with PCD. Although the questionnaire had face and construct validity, stigmatisation was not cross-validated against interviews. The present study had the twin aims of carrying out a qualitative study of the adult patients living with PCD, and using a structured design to validate the questionnaire measure of stigma.
| Type: | Article |
|---|---|
| Title: | Living with primary ciliary dyskinesia: a prospective qualitative study of knowledge sharing, symptom concealment, embarrassment, mistrust, and stigma |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1186/1471-2466-6-25 |
| Publisher version: | http://dx.doi.org/10.1186/1471-2466-6-25 |
| Language: | English |
| Additional information: | © 2006 Whalley and McManus; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. PMCID: PMC1635565 |
| Keywords: | Adult, Aged, Female, Humans, Interviews as Topic, Kartagener Syndrome, Male, Middle Aged, Prospective Studies, Questionnaires, Stereotyping |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > UCL Medical School |
| URI: | https://discovery.ucl.ac.uk/id/eprint/61728 |
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