Title |
Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families’ Counter-discourse for Recuperative Ethos
|
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Published in |
Journal of Medical Humanities, February 2017
|
DOI | 10.1007/s10912-017-9436-6 |
Pubmed ID | |
Authors |
Megan J. Thorvilson, Adam J. Copeland |
Abstract |
Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by using language such as "incompatible with life," physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community-including learning from blogs and online forums- employ palliative care practices, and seek more accurate, descriptive language that is compatible with care. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 3 | 21% |
United Kingdom | 2 | 14% |
Ireland | 1 | 7% |
Canada | 1 | 7% |
Spain | 1 | 7% |
Unknown | 6 | 43% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 8 | 57% |
Scientists | 4 | 29% |
Science communicators (journalists, bloggers, editors) | 1 | 7% |
Practitioners (doctors, other healthcare professionals) | 1 | 7% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 27 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 5 | 19% |
Student > Bachelor | 4 | 15% |
Other | 2 | 7% |
Lecturer > Senior Lecturer | 2 | 7% |
Student > Postgraduate | 2 | 7% |
Other | 4 | 15% |
Unknown | 8 | 30% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 6 | 22% |
Nursing and Health Professions | 3 | 11% |
Business, Management and Accounting | 2 | 7% |
Psychology | 2 | 7% |
Arts and Humanities | 2 | 7% |
Other | 3 | 11% |
Unknown | 9 | 33% |