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Endometriosis, an unknown entity: the consumer`s perspective

Cox, Helen, Ski, Chantal, Wood, Ros and Sheahan, Margo 2003, Endometriosis, an unknown entity: the consumer`s perspective, International journal of consumer studies, vol. 27, no. 3, pp. 200-209, doi: 10.1046/j.1470-6431.2003.t01-1-00302.x.

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Title Endometriosis, an unknown entity: the consumer`s perspective
Author(s) Cox, Helen
Ski, Chantal
Wood, Ros
Sheahan, Margo
Journal name International journal of consumer studies
Volume number 27
Issue number 3
Start page 200
End page 209
Publisher Blackwell Science
Place of publication Oxford, England
Publication date 2003-06
ISSN 1470-6423
1470-6431
Keyword(s) endometriosis
laparoscopy
education
consumer awareness
Endometriosis Association
Summary This paper reports the findings of a consumer-driven investigation conducted by the Centre for Clinical Nursing Research at Epworth Hospital in conjunction with the Endometriosis Association (Victoria, Australia) aimed at identifying the information and support needs of women experiencing endometriosis. Women's experiences of endometriosis and laparoscopy were examined. A questionnaire was designed to explore women's experiences of, and informational need for, the four categories of: diagnosis of endometriosis, endometriosis, laparoscopy and managing at home. A total of 465 women who had a positive diagnosis of endometriosis, including patients at the Epworth Endometriosis Centre and members of the Endometriosis Association, were included. The data were analysed in terms of frequency of responses and themes that arose from the research. Five main themes consistently emerged from the overall analysis of the questionnaire; these included: lack of communication, no-one listens, the emotional turmoil, expressions of gratitude to the Endometriosis Association and being young and helpless. Also identified was a lack of understanding of endometriosis and laparoscopy, on behalf of both the patient and the practitioner, which has led to communication of misinformation, extended physical pain and emotional distress. Based on these findings, recommendations were made for education strategies to be focused towards increasing awareness of endometriosis and for information to be disseminated using the preferred printed format and to be made available from gynaecologists, hospitals and schools. Through consumer participation, the information obtained in this study is of benefit to all women who come in contact with endometriosis by (a) validating women's experiences of endometriosis and (b) identifying women's needs in relation to the disease.
Language eng
DOI 10.1046/j.1470-6431.2003.t01-1-00302.x
Field of Research 111099 Nursing not elsewhere classified
HERDC Research category C1 Refereed article in a scholarly journal
Copyright notice ©2003, Blackwell Publishing Ltd
Persistent URL http://hdl.handle.net/10536/DRO/DU:30002015

Document type: Journal Article
Collection: School of Nursing and Midwifery
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