Free-text Survey Responses Research Articles

View from the Patient Perspective: Mixed-Methods Analysis of Post-Discharge Virtual Visits in a Randomized Controlled Trial

Virtual visits (VVs) are being used increasingly to provide patient-centered care and have undergone rapid uptake during the COVID-19 pandemic. Our aim was to compare satisfaction and convenience of virtual post-discharge follow-up for surgical patients and qualitatively analyze free-text survey responses in a randomized controlled noninferiority trial. Patient satisfaction with VVs has not been evaluated previously in a randomized controlled trial and few mixed-methods analyses have been done to understand barriers and facilitators to post-discharge visits. Patients undergoing laparoscopic appendectomy or cholecystectomy were randomized to VV or in-person visit (2:1). Surveys with 11 multiple-choice and 2 open-ended questions evaluated patient satisfaction and convenience. Univariate analysis compared responses to the multiple-choice questions and qualitative content analysis evaluated open-ended responses. Of 442 enrolled patients, 289 completed their postoperative visit and were sent surveys (55% response rate). Patients were categorized as VV (n= 135), crossover (randomized to virtual but completed in-person; n= 53), and in-person visits (n= 101). Patient-reported satisfaction was similar, but convenience was higher for VV patients. Open-ended responses (72 VVs, 14 crossovers, and 41 in-person visits) were qualitatively analyzed. In all groups, patient experience was influenced by quality of care, efficiency, and convenience. Barriers were different for virtual and in-person appointments. We found that quality of, and access to, care-whether in person or virtual-remained critical components of patient satisfaction. VVs address many barriers associated with in-person visits and were more convenient, but can present additional technological barriers.

Local Government Stakeholder Perceptions of Legitimacy and Conflict of Interest: The Alcohol Industry and the "Drink Free Days" Campaign in England.

Industry involvement in alcohol policy is highly contentious. The Drink Free Days (DFD) campaign (2018- 2019) run by Public Health England (PHE), an executive agency of government, and Drinkaware, an industry-funded 'alcohol education charity' to encourage middle-aged drinkers to abstain from drinking on some days was criticised for perceived industry involvement. We examine the extent to which the DFD campaign was supported by local-authority Directors of Public Health (DPHs) in England - which have a statutory remit for promoting population health within their locality - and their reasons for this. Our mixed-methods approach included a stakeholder mapping, online survey, and semi-structured interviews. The stakeholder mapping provided the basis for sampling survey and interview respondents. In total, 25 respondents completed the survey, and we conducted 21 interviews with DPHs and their local authority (LA) representatives. We examined survey responses, and coded free-text survey and interview responses to identify key themes. While some respondents supported the DFD campaign, others did not promote it, or actively opposed it, due mainly to concerns about conflicts of interest and the legitimacy of industry involvement in the campaign. These were considered to undermine PHE's independence and deflect attention from more important, evidence-based policy interventions such as alcohol pricing while conferring vicarious credibility on Drinkaware. We also found low levels of knowledge about alcohol-related harm, the effectiveness of different policies to address these and the policy-influencing strategies used by the alcohol industry. The findings highlight the dangers of industry partnership and potential conflicts of interest for government agencies and the ineffectiveness of the campaigns they run at local and national levels. They demonstrate the need for caution in engaging with industry-associated bodies at all levels of government and are thus of potential relevance to studies of other health-harming industries and policy contexts.

Postdocs' advice on pursuing a research career in academia: A qualitative analysis of free-text survey responses.

The decision of whether to pursue a tenure-track faculty position has become increasingly difficult for undergraduate, graduate, and postdoctoral trainees considering a career in research. Trainees express concerns over job availability, financial insecurity, and other perceived challenges associated with pursuing an academic position. To help further elucidate the benefits, challenges, and strategies for pursuing an academic career, a diverse sample of postdoctoral scholars ("postdocs") from across the United States were asked to provide advice on pursuing a research career in academia in response to an open-ended survey question. 994 responses were qualitatively analyzed using both content and thematic analyses. 177 unique codes, 20 categories, and 10 subthemes emerged from the data and were generalized into two thematic areas: Life in Academia and Strategies for Success. On life in academia, postdoc respondents overwhelmingly agree that academia is most rewarding when you are truly passionate about scientific research and discovery. 'Passion' emerged as the most frequently cited code, referenced 189 times. Financial insecurity, work-life balance, securing grant funding, academic politics, and a competitive job market emerged as challenges of academic research. The survey respondents note that while passion and hard work are necessary, they are not always sufficient to overcome these challenges. The postdocs encourage trainees to be realistic about career expectations and to prepare broadly for career paths that align with their interests, skills, and values. Strategies recommended for perseverance include periodic self-reflection, mental health support, and carefully selecting mentors. For early-career scientists along the training continuum, this advice deserves critical reflection before committing to an academic research career. For advisors and institutions, this work provides a unique perspective from postdoctoral scholars on elements of the academic training path that can be improved to increase retention, career satisfaction, and preparation for the scientific workforce.

‘Relieved to be seen’—patient and carer experiences of psychosocial assessment in the emergency department following self-harm: qualitative analysis of 102 free-text survey responses

ObjectivesWe sought to explore patient and carer experiences of psychosocial assessments following presentations to hospital after self-harm.DesignThematic analysis of free-text responses to an open-ended online survey.SettingBetween March and November 2019,...

Neurodevelopmental and Mental Health Screening for Patients with Turner Syndrome in Pediatric Endocrine Clinics: Results of a Pediatric Endocrine Society Survey

Introduction: International Turner syndrome (TS) Clinical Practice Guidelines recommend screening for neurodevelopmental (ND) and mental health (MH) concerns in girls with TS; however, it remains unclear whether this is implemented in current practice. The objective of this mixed methods study was to assess screening practices for ND and MH in girls with TS from the perspective of pediatric endocrinologists. Methods: Pediatric Endocrine Society members who provide care for girls with TS were invited to complete an electronic survey on screening practices. Descriptive statistics were used to summarize quantitative results concurrently with thematic analysis of free-text survey responses. Results: A total of 124 surveys were completed (86% attending pediatric endocrinologists, 81% at academic institutions). Overall, 25% of providers reported their patients with TS received both ND and MH screenings. Only 9 (9%) respondents endorsed screening for ND concerns themselves, while more providers (26%) reported they screen for MH concerns. Multiple barriers to screening for ND and MH concerns within the clinical setting were endorsed. Nearly all providers (>93%) reported they would consider using a short, validated screening tool for ND and MH concerns if such tools were available. Discussion: A minority of pediatric endocrinologists currently perform ND or MH screening for patients with TS, however, many would be interested in implementing a brief screening tool into their clinical practice. Given almost all girls with a TS diagnosis receive care from pediatric endocrinologists at least annually, this may be an effective method to increase the proportion of girls with TS who receive recommended screenings.

Grass-roots lobbying and the provision of information-processing resources in state legislatures

ABSTRACT Citizens lobby state legislators about policy issues frequently. Political science research holds conflicting findings regarding the efficacy of grass-roots lobbying messages; some studies find that legislators ignore lobbying by constituents that they do not agree with (Butler et al., 2012), while others find that legislators act based on the cost constituents bear. In environments where the costs of contacting legislators are flattened (Cluverius, 2017), trust becomes the primary heuristic that legislators use to process information. Information processing requires resources: time, pay, and staff for legislators to better understand the information they are receiving. I use a series of interviews and free-text survey responses to evaluate how these resources affect how legislators view grass-roots lobbying messages. I find that legislators with longer sessions are less influenced by grass-roots lobbying, that legislative staff make legislators more likely to be influenced, and that legislator pay has no meaningful effects on legislator influence.

Impact of COVID-19 on People with Asthma: A Mixed Methods Analysis from a UK Wide Survey

Background: The impact of COVID-19 on people with asthma is a concern, with evidence that they are more likely to require intensive care if hospitalised. However, data regarding longer-term impacts is limited. Methods: Using data from an online UK-wide survey of 4,500 people with asthma (Median age 50-59 years, 81% female), conducted by the Asthma UK-British Lung Foundation partnership in October 2020, we undertook a mixed methods analysis of the characteristics and experience of those reporting that they had had COVID-19. Findings: The COVID-19 group (n=471, 10·5%) reported increased inhaler use and worse asthma management, compared to those not reporting COVID-19, but did not differ by gender, ethnicity, or household income. Among the COVID-19 group, 56·1% reported having long-COVID, 20·2% were ‘unsure’. Those with long-COVID were more likely than those without long-COVID to describe: their breathing as worse or much worse after their initial illness (73·7% Vs 34·8%, P<0·001), increased inhaler use (67·8% Vs 34·8%, P<0·001), and worse or much worse asthma management (59·6% Vs 25·6%, P<0·001). Having long-COVID was not associated with age, gender, ethnicity, UK nation or household income. Analysis of free text survey responses identified three key themes: 1) variable COVID-19 severity, duration, and recovery; 2) Symptom overlap and interaction between COVID-19 and asthma; 3) Barriers to accessing healthcare. Interpretation: Persisting symptoms are common in people with asthma following COVID-19. Measures are needed to ensure appropriate healthcare access including clinical evaluation and investigation, to distinguish between COVID-19 symptoms and asthma. Funding: KEJP was supported by the Imperial College Clinician Investigator Scholarship. KEJP would like to acknowledge the National Institute for Health Research (NIHR) Biomedical Research Centre based at Imperial College Healthcare NHS Trust and Imperial College London for their support. No other authors have anything to declare. Declaration of Interest: None to declare. Ethical Approval: Ethical approval for this study was granted by the Imperial College Research Governance and Integrity Team (RGIT) (ICREC Ref: 20IC6625).

Comparison of Graphic Organizers Versus Online Flash Cards as Study Aids in an Elective Veterinary Cardiology Course.

The ideal study aid format for veterinary students remains unknown. Both graphic organizers (GOs) and flash cards (FCs) have shown utility for enhancing learning in specific contexts. A mixed-methods prospective randomized crossover trial was undertaken with veterinary students (n= 59) in an elective cardiology course. All students received identical content presented via weekly in-class lectures and were given study aids in either GO or FC format. One week later, students completed quizzes of content knowledge for each lesson and indicated amount of time spent studying. Crossover occurred such that groups of students alternated between receiving GOs and FCs. Quantitative and qualitative data were collected in the form of in-depth pre- and post-course surveys. Overall, there was no significant difference in quiz scores (p= .26) or time spent studying (p= .33) based on study aid type. Time spent studying for each quiz, as well as other measures of study habits, decreased significantly throughout the semester. Post-course survey responses showed overall higher student satisfaction for GOs compared to FCs (p=.022), as well as a shift in preference away from FCs throughout the semester (p= .03). Free-text survey responses revealed that individual students had strong preferences either for or against FCs in the context of their particular study habits. In an elective veterinary cardiology course, use of GO format compared to FC format study aids resulted in equivalent short-term learning outcomes and time spent studying, with each study aid format appealing to specific learning preferences of individual students.

Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals’ perspectives

ObjectivesCTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management support for patients in secondary care.MethodsAn online survey of health professionals in the UK, including 45 multiple-choice and free-text questions, was analysed descriptively. Free-text survey responses were analysed thematically to identify health professionals’ perceptions of best practice and unmet needs.ResultsThe online survey included 120 health professionals (34% specialist nurses, 51% doctors and 12% allied health professionals), predominantly working in rheumatology (52.9%) and nephrology (21.5%) departments. Access to self-management programmes or clinics for people with CTD or vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to ‘How well is your team providing self-management support to people with CTD or vasculitis?’, 38% of respondents reported ‘not very well’ or ‘not well at all’. Direct access to psychological support was available in 76.9% of nephrology and 32.8% of rheumatology departments. More than 80% of respondents would like additional training. Key themes from the qualitative data (free-text survey responses) included the importance of: dedicated psychological support and self-management programmes for people with CTD and vasculitis, a whole-team approach (specialist teams empowering people to manage their own care), staff training (e.g. brief psychological interventions) and signposting to resources, including patient charities.ConclusionPeople with CTD and vasculitis have complex needs, and improvements in self-management and psychological support are required in UK rheumatology and nephrology departments.

Women's unmet needs in early labour: Qualitative analysis of free-text survey responses in the M@NGO trial of caseload midwifery

Objectiveto analyse women's experiences of early labour care in caseload midwifery in Australia. Designthis study sits within a multi-site randomised controlled trial of caseload midwifery versus standard care. Participant surveys were conducted at 6-weeks and 6-months after birth. Free-text responses about experiences of care were subject to critical thematic analysis in NVivo 11 software. Settingtwo urban Australian hospitals in different states. Participantswomen 18 years and over, with a singleton pregnancy, less than 24 weeks’ pregnant, not planning a caesarean section or already booked with a care provider; were eligible to participate in the trial. Interventionsparticipants were randomised to caseload midwifery or standard care for antenatal, labour and birth and postpartum care. Measurements and findingsThe 6-week survey response rate was 58% (n = 1,019). The survey included five open questions about women's experiences of pregnancy, labour and birth, and postnatal care. Nine-hundred and one respondents (88%) provided free text comments which were coded to generate 10 categories. The category of early labour contained data from 84 individual participants (caseload care n = 44; standard care n = 40). Descriptive themes were: (1) needing permission; (2) doing the ‘wrong’ thing; and (3) being dismissed. Analytic themes were: (1) Seeking: women wanting to be “close to those who know what's going on”; and (2) Shielding: midwives defending resources and normal birth. Key conclusionsRegardless of model of care, early labour care was primarily described in negative terms. This could be attributed to reporting bias, because women who were neutral about early labour care may not comment. Nevertheless, the findings demonstrate a gap in knowledge about early labour care in caseload midwifery models. Implications for practiceMaternity services that offer caseload midwifery are ideally placed to evaluate how early labour home visiting impacts women's experiences of early labour.

P106 Psychological and self-management support for people with systemic vasculitis or CTDs: a mixed methods study of health professionals’ perception of provision in Rheumatology and Nephrology departments in the UK

Abstract Background People with a connective tissue disease (CTD) or systemic vasculititis have diseases which can be life and organ threatening, require complicated medication regimens and impact on all aspects of health-related quality of life. People are routinely managed across multiple medical specialities and have to navigate their way through complex health care systems. The aim of this study was to investigate current psychological and self-management support available for people with CTDs and vasculitis in rheumatology and nephrology departments in the UK. Methods An online survey of health professionals in rheumatology and nephrology departments was conducted with follow-up interviews. The survey comprised 45 multiple-choice and free-text questions. Quantitative material was analysed descriptively. Follow-up interviews were recorded, transcribed and analysed thematically, together with free-text survey responses, to identify health professionals’ perceptions on unmet needs and key improvements required. Results The online survey included 120 health professional respondents (34 % specialist nurses, 51% doctors and 12 % allied health professionals and pharmacists). Respondents worked primarily in rheumatology (52.9%) and nephrology (21.5%). Access to self-management programmes or clinics for people with CTD and vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to the question “How well is your team providing self-management support to people with CTD and vasculitis?”, 38% of respondents reported not very well, or not well at all. Direct access to psychological support (either within their department or within the hospital) was available for patients in 76.9% of nephrology and 32.8% of rheumatology departments. Where psychological referrals were direct, the assessment of the quality of the service by health professionals was higher than when the referrals were indirect (i.e when patients were either referred to primary care or asked to self-refer) (X2=13.83, p < 0.001). Over 80% of health-professional respondents reported they would like additional training in providing self-management support. Key themes from the qualitative data included the need for dedicated psychological support within departments, self-management programmes (specifically for people with CTD and vasculitis or opening up established programmes for people with other conditions), the benefits of a whole team approach (specialist teams not individual clinicians working to empower patients to take a lead in managing their own care), individual staff training needs ( training in brief psychological interventions and support for health professionals to set up self-management programmes) and signposting to additional resources for patients and their families ( disease-specific written and online information and support from patient charities). Conclusion People with CTD and vasculitis have complex needs and systemic improvements in support are required. Patients in nephrology departments are more likely to have access to psychological support than those in rheumatology. There is inadequate access to structured self-management programmes in both nephrology and rheumatology. Disclosures J.C. Robson None. M. Shepherd None. M. Ndosi None. L. Harper None. C. Flurey None. S. Logan None. K. Austin None. E. Dures None.

Student Interest in a Primary Care of Underserved Populations Course.

Medical students often lack curricular offerings specific to the care of underserved populations. We surveyed first- and second-year students to inform the development of a 4-week course on the skills necessary to care and advocate for underserved populations within a primary care context. This study assessed students' interest in the potential course, interest in primary care (PC) and underserved care (UC), and factors that would make the course more or less interesting to students. The authors designed and offered a survey examining UC, PC, and course interest to all first- and second-year students at one institution. Open-ended free-text survey responses were qualitatively analyzed using content analysis. Response rate was 72% (271/374). Most responding students (90%; 198/220) were very to somewhat interested in UC; 60% (132/220) were very to somewhat interested in PC; and 79% (173/220) were very to somewhat interested in the described course. Very interested students were more likely to endorse interest in learning about community advocacy, having a faculty mentor, clinical care experience, and loan repayment than those with low course interest (P<.001). Analysis of open-ended responses revealed an emphasis on advocacy and career feasibility, resulting in the inclusion of these topics in the final course curriculum. This manuscript outlines potential areas of engagement for students demonstrating low or high interest in a Caring for Underserved Patients course. Our study may inform educators seeking to develop similar curricular interventions, particularly those who aim to recruit students to PC or UC careers.

The “difficult” cadaver: weight bias in the gross anatomy lab

ABSTRACT Background: The prevalence of overweight and obesity continues to rise and is associated with increased morbidity and mortality. Weight bias is common among physicians and medical students and limits the therapeutic alliance between providers and patients with overweight and obesity. Objective: The authors sought to explore the relationship between the gross anatomy course and medical student attitudes towards weight and obesity. Design: The authors employed a mixed-methods approach consisting of semi-structured interviews and anonymous web-based surveys of first-year medical students taking gross anatomy at one USA medical school. They analyzed transcripts of interviews and free-text survey responses using a grounded theory approach and performed tests of association to investigate the relationship between demographic information, responses to multiple-choice survey questions and weight bias. Results: A total of 319 (52%) first-year medical students (2015–2018) completed the survey and 33 participated in interviews. Of survey respondents, 71 (22%) responded that the course had changed how they felt about people with overweight/obesity. These respondents were also more likely to affirm that the course had affected their views toward their own bodies (p < 0.001). Qualitative data analysis identified three overarching themes within students’ descriptions of the effects of the gross anatomy lab on attitudes toward bodies perceived to have excess weight: these bodies were described as 1) difficult, 2) unhealthy, and 3) evoking disgust. Students extrapolated from their experiences with cadavers to imagined interactions with future patients, relying heavily on the narrative of the difficult patient. Conclusions: At one USA medical school, students perceived their experiences in gross anatomy as shaping their attitudes toward individuals with overweight or obesity. Efforts to reduce medical student weight bias ought to target this previously unexplored potential site of weight bias.

Analyzing free-text survey responses: An accessible strategy for developing patient-centered programs and program evaluation

Despite widespread availability of yoga in the Veterans Health Administration (VA), it remains unclear how to best evaluate yoga programs. This is particularly problematic for programs aimed at veterans with mental health concerns, as evaluation typically focuses narrowly upon mental health symptom severity, even though program participants may have other health-related priorities. We analyzed responses to free-text questions on 237 surveys completed by veterans with mental health concerns enrolled in a yoga program at six VA clinics in Louisiana to characterize veteran participants’ experiences with yoga. Qualitative analysis resulted in 15 domains reflecting veterans’ individual health-related values and priorities. We use results to illustrate the potential for analysis of free-text responses to reveal valuable insights into patient experiences, demonstrating how these data can inform patient-centered program evaluation. The approach we present is more accessible to those responsible for decision-making about local programs than conventional methods of analyzing qualitive evaluation data.

The ‘good medicine’ of job satisfaction

At face value, a veterinary career has some obvious drawbacks. It is, by its very nature, an unpredictable and challenging job dealing with problem after problem. The stakes are high,...

"My mentor didn't speak to me for the first four weeks": Perceived Unfairness experienced by nursing students in clinical practice settings.

To explore the perceived unfairness experienced by student nurses during their undergraduate clinical placements. It is important that student nurses feel supported by practice staff during their clinical placement education experiences. However, it has been reported that learners can feel ignored, unsupported and bullied by others in the clinical environment and this has a detrimental effect on their learning. It is important to understand the student nurse perspective and explore ways in which their feelings of belongingness might be enhanced in the clinical area. A descriptive narrative approach was used to explore the qualitative data generated by the survey and interviews. Limited closed-question survey data were acquired to explore a selection of quantified survey responses about placements and mentorship. A survey was conducted with 1,425 student nurses from adult and mental health degree nursing pathways, across nine institutions in the North West of England, UK. Unstructured interviews were undertaken with 22 student nurses from across these nine institutions. The data generated from both methods (free-text survey responses and interview) were thematically analysed. There were times when student nurses felt that they had been treated unfairly by various members of the healthcare team during their clinical placements. Unfairness was related to being ignored and unsupported or being used as an "extra pair of hands" and having their supernumerary status ignored. Student nurses want to have feelings of belongingness in the clinical area and value enthusiasm for teaching from mentors. Certain positive mentor qualities were identified through the data in this study. These have been used to inform a tiered model of mentorship, to inform future thinking about student nurse education. Student nurses can feel like they are being treated unfairly in the clinical area in numerous ways. Identifying ways in which mentorship practice can be developed to adequately support education is important. This can lead to satisfaction and development on both sides of the student/educator relationship. Exploring student nurse perceptions of their learning is important when attempting to enhance educational practice in the clinical setting.

" Blaming, shaming, humiliation": Stigmatising medical interactions among people with non-epileptic seizures.

Background: 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. Methods: 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' texts from a social-constructionist perspective on health and illness. Results: 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' 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. Conclusions: 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.

“ Blaming, shaming, humiliation”: Stigmatising medical interactions among people with non-epileptic seizures

Background: 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. Methods: 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’ texts from a social-constructionist perspective on health and illness. Results: 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’ 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. Conclusions: 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.

The motivation and capacity to go ‘above and beyond’: Qualitative analysis of free-text survey responses in the M@NGO randomised controlled trial of caseload midwifery

The motivation and capacity to go ‘above and beyond’: Qualitative analysis of free-text survey responses in the M@NGO randomised controlled trial of caseload midwifery

“Blaming, shaming, humiliation”: Stigmatising medical interactions among people with non-epileptic seizures

Background: People with non-epileptic seizures (NES) describe difficult and 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 healthcare encounters.Methods: 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’ texts from a social-constructionist perspective on health and illness.Results: 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’ 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.Conclusions: 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 they recount conduct that defies 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.