{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T20:32:13Z","timestamp":1783542733874,"version":"3.55.0"},"update-to":[{"DOI":"10.12688\/wellcomeopenres.12133.1","type":"new_version","label":"New version","source":"publisher","updated":{"date-parts":[[2017,10,24]],"date-time":"2017-10-24T00:00:00Z","timestamp":1508803200000}}],"reference-count":65,"publisher":"F1000 Research Ltd","license":[{"start":{"date-parts":[[2017,10,24]],"date-time":"2017-10-24T00:00:00Z","timestamp":1508803200000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Wellcome Trust","award":["200923"],"award-info":[{"award-number":["200923"]}]}],"content-domain":{"domain":["wellcomeopenresearch.org"],"crossmark-restriction":false},"short-container-title":["Wellcome Open Res"],"abstract":"<ns4:p>\n                    <ns4:bold>Background<\/ns4:bold>\n                    : People with non-epileptic seizures (NES) describe challenging relationships with health professionals, and explain negative interactions as common and expected. Despite these difficulties, little is known about how people with NES experience difficult healthcare encounters.\n                  <\/ns4:p>\n                  <ns4:p\/>\n                  <ns4:p>\n                    <ns4:bold>Methods<\/ns4:bold>\n                    : Using a thematic discourse analysis approach, we analysed the free-text survey responses of 135 people with NES and asked: what kind of challenges do people living with this condition encounter when interacting with health professionals, and how do they experience the consequences of difficult interactions? We explore their experiences by interpreting the latent meaning of participants\u2019 texts from a social-constructionist perspective on health and illness.\n                  <\/ns4:p>\n                  <ns4:p\/>\n                  <ns4:p>\n                    <ns4:bold>Results<\/ns4:bold>\n                    : The overarching narrative depicts a fundamental breakdown in patient-provider relationships. According to our data, the negative experiences of study participants emerge from more than practitioners\u2019 lack of awareness of NES and access to information about the condition - to the extent that it is available. In examining the challenges people with NES encounter when interacting with health professionals, their main experiences centre on blame and humiliation. When exploring their experiences, theories of stigma serve as a useful theoretical framework.\n                  <\/ns4:p>\n                  <ns4:p\/>\n                  <ns4:p>\n                    <ns4:bold>Conclusions<\/ns4:bold>\n                    : Normative judgements arising from psychogenic understandings of NES are stigmatising and restrict professional displays of respectful (patient-centred) care. Those with the condition depict being negatively stereotyped, illegitimated and held morally culpable by health professionals. Perceived to lack medical, moral and credible status, participants describe practitioners who treat them with disrespect, and some recount conduct that defies all ethical and professional obligations and standards. These encounters can have wide-ranging adverse consequences for patients: emotionally, physically, and for their future healthcare. The quality of healthcare interactions for people with NES requires urgent improvements. In addition to increased awareness of the condition, practitioners need to be conscious of making and acting on adverse moral appraisals when interacting with this patient group.\n                  <\/ns4:p>","DOI":"10.12688\/wellcomeopenres.12133.2","type":"journal-article","created":{"date-parts":[[2017,10,24]],"date-time":"2017-10-24T10:36:40Z","timestamp":1508841400000},"page":"55","update-policy":"https:\/\/doi.org\/10.12688\/wellcomeopenres.crossmark-policy","source":"Crossref","is-referenced-by-count":53,"title":["\u201cBlaming, shaming, humiliation\u201d: Stigmatising medical interactions among people with non-epileptic seizures"],"prefix":"10.12688","volume":"2","author":[{"given":"Catherine","family":"Robson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5752-1486","authenticated-orcid":false,"given":"Olaug 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B\u00fclow, School of Health and Welfare, J\u00f6nk\u00f6ping University, J\u00f6nk\u00f6ping, Sweden, 02 Oct 2017, version 1, 3 approved with reservations","URL":"https:\/\/wellcomeopenresearch.org\/articles\/2-55\/v1#referee-response-24460","order":2,"name":"referee-response-24460","label":"Referee Report","group":{"name":"article-reports","label":"Article Reports"}},{"value":"<b>Catherine Robson<\/b>; <i>Posted: 13 Oct 2017<\/i>; We would like to thank the reviewers for their insightful comments; which have added more depth, substance and clarity to this paper. We are especially pleased that reviewers from different disciplines and areas of practice (a GP, neurologist and social scientist) took the time to thoughtfully review our work \u2013 and we sincerely thank you. We address the comments in turn below, removing some background text that did not require action. &nbsp; <b>Pia H. B&uuml;low<\/b>,&nbsp;School of Health and Welfare, J&ouml;nk&ouml;ping University, J&ouml;nk&ouml;ping, Sweden&nbsp;&nbsp; 1) I find the one-sided focus on negative experiences problematic especially since the focus is \u201cthe single worst interaction\u201d. I do understand the authors wish to give the negative aspect space. But even if this is the most difficult part for people with NES, and what calls for improvement in the health care, a two-sided focus in the same article could offer a more nuanced picture. This paper was borne out of a desire to address (anecdotally - as we, and the patients we talk to see it) one of the most troublesome aspects of living with medically unexplained seizures \u2013 poor quality healthcare encounters. To explore and draw attention to these facets we made a (very) conscious decision to only focus on negative encounters. As described in the introduction, there are many reports of people with NES who describe negative interactions as common and expected, but there is scant literature as to what they perceive unhelpful\/ adverse about these encounters, and why these situations might occur. Hence, the reason for our focus. Notably, there is also a growing body of literature exploring the perspectives of health professionals, which suggests they find interactions with NES patients \u201ctough\u201d, \u201cuncomfortable\u201d, \u201cchallenging\u201d and \u201cfrustrating\u201d. Therefore, we thought the study focus apt. &nbsp; We agree a two-sided approach would offer a more nuanced picture of patients\u2019 experiences. However, the volume of data (and our desire to explore this considerable depth and present a rich selection of quotes) and what we thought the most important priority (as described above) prevented this. We have, however, added a reference to a paper that incorporates other (\u201cpositive\u201d) data: Lian, O.S. and C. Robson, Socially constructed and structurally conditioned conflicts in territories of medical uncertainty, <i>Social Theory &amp; Health<\/i>, (under review). 2) Another methodological problem I see, is that participants were recruited from online support groups only. This arrangement is practical for reaching people with a certain illness\/diagnosis but also implies risks for biases. The authors discuss the limitation of their choice noting that people with NES who does not have access to Internet will be excluded. However, not everyone with a certain illness would like to join a support group. Additionally, although the presented analysis draws on written accounts and narratives (my interpretation) given as free-text responses, and even though the authors claim to analyse these \u201cfrom a social-constructionist perspective\u201d, they do not discuss other possible biases related to support groups as a kind of sub group of people with NES. Other studies using data from support groups (and similar groups) for other problems than NES have shown collective narrating and co-narrating as important aspects of the interaction in support groups (B&uuml;low, 2004; Cain, 1991; Steffen, 1997) <sup>2<\/sup> <sup>-<\/sup> <sup>4<\/sup>. Mutual sharing of information as well as mutual sharing of experiences in support groups could be reflected in the free-text responses. This as well as the possibility for more engaged and informed respondents might be interesting to discuss. &nbsp; This is an interesting consideration. However, the supporting literature mentioned relates to ethnographic observation of regular (e.g. weekly) \u201cin-person\u201d meetings (each exploring a particular setting\/context). Our data is taken from a survey advertised to members of 20 support groups, and participants were widely geographically distributed (albeit possibly connected via online avenues). We agree that a degree of co-construction\/collective narration is possible, but given the research design probably sloping towards the minimal. We put a lot of thought into identifying limitations (with more now added). At 800+ words in length, we have dedicated much more text to this section than usually allowable in an article. In terms of possible biases related to support groups we do say that \u201c\u2026 our population was self-selected as people with NES who have access to the Internet and are members of online support groups, and there might be important differences between our participants and others with the condition. A likely bias it that those who chose to participate in our study have experienced more, or more severe, negative medical interactions than those who did not\u201d. 3) The result, presented under six themes, offers a richness of citations from the collected data. In this part the character of data as accounts and narratives are pointed out using verbs such as the participants \u201cdescribe\u201d, \u201cexplain\u201d, \u201creport\u201d etc. In the discussion, however there is sometimes a tendency of changing the narrated experiences into something else like \u201cpeople with NES are held accountable for onset of the illness\u201d. Apologies, the wording in the discussion reflects analysing participant experiences according to the overarching narrative, but we agree this cannot be extrapolated to people with NES more generally. We have edited relevant text and included words such as \u201cperceive\u201d, \u201cdepict\u201d, \u201crelate\u201d, \u201crecount\u201d, etc. 4) The use of the concept of stigma in the discussion is relevant and intelligible. Still, there are some gaps in the line of reasoning when tying different factors together and when the authors move from dealing with the participants\u2019 recounted experiences and the author\u2019s further interpretation of these. One example is the description of how constructions of stereotypes like \u201clazy, crazy, time-wasters and fakers\u201d become the obvious consequence of when seizures are explained as \u201ccaused by psychological factors\u201d and \u201clabelled as having a psychogenic illness\u201d. There are many illnesses which are thought to be caused of psychological factors like for instance mental illnesses in general. However, mental illnesses are not stigmatizing in relation to health professionals but in society generally speaking. The stigmatizing in relation to health professionals could be something of certain interest for the study of how people with NES experience encounters in health care contexts. &nbsp; It is interesting you mention this, as in the early rounds of data analysis I often posited questions such as: \u201cwould a health professional accuse a person with schizophrenia of \u201cfaking\u201d \u2026 express contempt for them, if not \u2013 why not\u201d? The difference, we believe, comes back to the psychogenic element (physical symptom(s) thought caused by psychological factors). Mental symptoms caused by psychological factors seem easier to accept. Mental illness might also be less stigmatising in health care contexts as it is an established area of practice. People with psychogenic conditions tend to fall through the cracks (in the case of NES: neurology and psychiatry). In relation to psychogenic conditions we tried to cover these angles in the text (e.g. Discussion, Loss of status): treated as though they have \u201cno medical [physical] problem\u201d, \u201cempirical variability\u201d, and \u201c \u2026 reinforced by systems that struggle to place psychogenic conditions; which fall into neither camp on which our medical knowledge, curricula, or health services are built\u201d. Another interesting point to consider is that psychological symptoms caused by physical factors also appear palatable (in both medical and social spheres). Unfortunately, a fuller analysis and discussion is beyond the bounds of this paper (and will undoubtedly stray into the philosophical: see for example Dekkers and van Domburg, 2000), but could be usefully incorporated in future work. &nbsp; As a social scientist interested in narratives about less visible illnesses such as chronic fatigue syndrome, burnout and similar contested illnesses, I wonder about the character of NES with visible symptoms resembling epilepsy for which there exists biomedical explanations and which are lacking for NES, and how this influence the encounters with health professionals One possibility to elaborate this aspect is to consider the medical history about diagnoses like hysteria and how NES is different compared to less visible contested illnesses. The visibility of NES is mentioned in the conclusion but could be elaborated on. &nbsp; This ties into a point made by Prof. Dowrick (2b) - We have reflected on the possible similarities\/differences between the negative experiences of people with NES and those reported by people with other MUPS, and have dedicated a paragraph to this in the Strengths and limitations section. Please also refer to our text above. Regarding the medical history of NES (hysteria with convulsions, catalepsy, etc.) we draw on this in the paper now referenced: Lian, O.S. and C. Robson, Socially constructed and structurally conditioned conflicts in territories of medical uncertainty, <i>Social Theory &amp; Health<\/i>, (under review). 5) Finally, as this study shows that the participants \u201cmain (negative) experiences centre on blame and humiliation\u201d maybe the analysis more obviously should be grounded on the free-text responses as accounts explaining the challenges encounters with health professionals implies for people with NES. &nbsp; Agree, and we have incorporated this in the abstract, the introduction and in methods.&nbsp;","URL":"https:\/\/wellcomeopenresearch.org\/articles\/2-55\/v2#referee-comment-3107","order":3,"name":"referee-comment-3107","label":"Referee Comment","group":{"name":"article-reports","label":"Article Reports"}},{"value":"This work was supported by the Wellcome Trust [200923]. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.","order":4,"name":"grant-information","label":"Grant Information"},{"value":"This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.","order":0,"name":"copyright-info","label":"Copyright"}]}}