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How sociophenomenology of the body problematises the ‘problem-oriented approach’ to growth hormone treatment
  1. Maria Cristina Murano1,2,3,
  2. Jenny Slatman4,
  3. Kristin Zeiler5
  1. 1Department of Culture and Communication, Linköping University, Linköping, Sweden
  2. 2Medicine, Science, Health and Society (Cermes3), School for Advanced Studies in the Social Sciences (EHESS), Paris, France
  3. 3Center for Bioethics, Children’s Mercy Kansas City, Kansas City, MO, USA
  4. 4Department of Culture Studies, Tilburg University, Tilburg, The Netherlands
  5. 5Department of Thematic Studies: Technology and Social Change, Linköping University, Linköping, Sweden
  1. Correspondence to Maria Cristina Murano, Department of Culture and Communication, Linköping University, Linköping 581 83, Sweden; maria.cristina.murano{at}liu.se

Abstract

This article examines how people who are shorter than average make sense of their lived experience of embodiment. It offers a sociophenomenological analysis of 10 semistructured interviews conducted in the Netherlands, focusing on if, how, and why height matters to them. It draws theoretically on phenomenological discussions of lived and objective space, intercorporeality and norms about bodies. The analysis shows that height as a lived phenomenon (1) is active engagement in space, (2) coshapes habituated ways of behaving and (3) is shaped by gendered norms and beliefs about height. Based on this analysis, the article challenges what we label as the ‘problem-oriented approach’ to discussions about growth hormone treatment for children with idiopathic short stature. In this approach, possible psychosocial disadvantages or problems of short stature and quantifiable height become central to the ethical evaluation of growth hormone treatment at the expense of first-hand lived experiences of short stature and height as a lived phenomenon. Based on our sociophenomenological analysis, this paper argues that the rationale for giving growth hormone treatment should combine medical and psychological assessments with investigations of lived experiences of the child. Such an approach would allow considerations not only of possible risks or disadvantages of short stature but also of the actual ways in which the child makes sense of her or his height.

  • medical ethics/bioethics
  • child health
  • endocrinology including diabetes
  • philosophy
  • medical humanities

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Footnotes

  • Contributors MCM designed the study, recruited the participants, conducted and transcribed the interviews. JS and KZ provided major feedback and suggestions on the empirical part of this research. The three authors read the transcripts line-by-line and interpreted the data. A first draft was written by MCM and it was then discussed with JS and KZ, who made critical, incisive and detailed comments. JS contributed in writing the methods and interviews’ analysis sections, while KZ contributed in writing the theoretical part, the interviews’ analysis and the discussion. All authors have read and approved the final version.

  • Funding This study was funded by the Education, Audiovisual and Culture Executive Agency of the European Union (Fellowship: Erasmus +, Erasmus Mundus Joint Doctoral Programme on Dynamics of Health and Welfare).

  • Competing interests None.

  • Patient consent This research did not involve patients (i.e. interviewees did not undergo the medical treatment we refer to in the article). However, all participants discussed an informed consent form with the first author and signed it. Participants have been anonymised and given pseudonyms throughout this manuscript.

  • Ethics approval Ethical clearance for this project was obtained by Maastricht University’s Local Ethical Review Board (25 May 2016, reference number: 201601).

  • Provenance and peer review Not commissioned; externally peer reviewed.

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