scholarly journals Stigma and Adults with Tourette’s Syndrome: “Never Laugh at Other People’s Disabilities, Unless they have Tourette’s—Because How Can You Not?”

Author(s):  
Melina Aikaterini Malli ◽  
Rachel Forrester-Jones

AbstractTourette’s syndrome (TS) is a condition that has been stigmatised and mocked in contemporary society, yet little is known about the subjective experience of those directly affected by it. Guided by Public and Patient Involvement (PPI) a mixed method design was used for this study to explore the experience of stigma in adults living with TS in the UK. A total of one hundred and ninety-nine adults participated in a cross-sectional online survey using an adapted version of the Discrimination and Stigma Scale (DISC-12) and the Perceived Quality of Life (PQoL) scale, twenty of whom were also interviewed using a semi-structured interview schedule. Quantitative findings indicated that participants experienced discrimination in numerous life domains; most prominently in education (75.4%), social life (71.4%), public transport (60.8%) and employment (54.3.%). The PQoL of adults with Tourette’s was found to be negatively correlated with both Enacted and Anticipated Discrimination from the DISC-12 scale. Qualitative findings illustrated the pervasive nature of TS stigma, which expanded beyond micro-interactions, and which could be observed at a structural level. The peculiar impact of disparagement humour in the construction and promulgation of “othering” individuals with TS was also highlighted. Concealment and self-stigma were mechanisms commonly utilised by individuals to manage their “spoiled identity”, inhibiting active and collective responses to stigmatisation. The study highlights how TS stigma acts as a barrier to social and economic participation for adults with the condition and helps identify factors that need to be considered when developing anti-stigma strategies.

2021 ◽  
Vol 5 (1) ◽  
pp. e000942
Author(s):  
Oliver G P Lawton ◽  
Sarah A Lawton ◽  
Lisa Dikomitis ◽  
Joanne Protheroe ◽  
Joanne Smith ◽  
...  

COVID-19 has significantly impacted young people’s lives yet little is known about the COVID-19 related sources of information they access. We performed a cross-sectional survey of pupils (11–16 years) in North Staffordshire, UK. 408 (23%) pupils responded to an online survey emailed to them by their school. Descriptive statistics were used to summarise the data. Social media, accessed by 68%, played a significant role in the provision of information, despite it not being considered trustworthy. 89% felt that COVID-19 had negatively affected their education. Gaps in the provision of information on COVID-19 have been identified.


BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e043397
Author(s):  
Austen El-Osta ◽  
Aos Alaa ◽  
Iman Webber ◽  
Eva Riboli Sasco ◽  
Emmanouil Bagkeris ◽  
...  

ObjectiveInvestigate the impact of the COVID-19 lockdown on feelings of loneliness and social isolation in parents of school-age children.DesignCross-sectional online survey of parents of primary and secondary school-age children.SettingCommunity setting.Participants1214 parents of school-age children in the UK.MethodsAn online survey explored the impact of lockdown on the mental health of parents with school-age children, and in particular about feelings of social isolation and loneliness. Associations between the UCLA Three-Item Loneliness Scale (UCLATILS), the Direct Measure of Loneliness (DMOL) and the characteristics of the study participants were assessed using ordinal logistic regression models.Main outcome measuresSelf-reported measures of social isolation and loneliness using UCLATILS and DMOL.ResultsHalf of respondents felt they lacked companionship, 45% had feelings of being left out, 58% felt isolated and 46% felt lonely during the first 100 days of lockdown. The factors that were associated with higher levels of loneliness on UCLATILS were female gender, parenting a child with special needs, lack of a dedicated space for distance learning, disruption of sleep patterns and low levels of physical activity during the lockdown. Factors associated with a higher DMOL were female gender, single parenting, parenting a child with special needs, unemployment, low physical activity, lack of a dedicated study space and disruption of sleep patterns during the lockdown.ConclusionsThe COVID-19 lockdown has increased feelings of social isolation and loneliness among parents of school-age children. The sustained adoption of two modifiable health-seeking lifestyle behaviours (increased levels of physical activity and the maintenance of good sleep hygiene practices) wmay help reduce feelings of social isolation and loneliness during lockdown.


Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 735
Author(s):  
Schoultz Mariyana ◽  
Leung Janni ◽  
Bonsaksen Tore ◽  
Ruffolo Mary ◽  
Thygesen Hilde ◽  
...  

Background: Due to the COVID-19 pandemic and the strict national policies regarding social distancing behavior in Europe, America and Australia, people became reliant on social media as a means for gathering information and as a tool for staying connected to family, friends and work. This is the first trans-national study exploring the qualitative experiences and challenges of using social media while in lockdown or shelter-in-place during the current pandemic. Methods: This study was part of a wider cross-sectional online survey conducted in Norway, the UK, USA and Australia during April/May 2020. The manuscript reports on the qualitative free-text component of the study asking about the challenges of social media users during the COVID-19 pandemic in the UK, USA and Australia. A total of 1991 responses were included in the analysis. Thematic analysis was conducted independently by two researchers. Results: Three overarching themes identified were: Emotional/Mental Health, Information and Being Connected. Participants experienced that using social media during the pandemic amplified anxiety, depression, fear, panic, anger, frustration and loneliness. They felt that there was information overload and social media was full of misleading or polarized opinions which were difficult to switch off. Nonetheless, participants also thought that there was an urge for connection and learning, which was positive and stressful at the same time. Conclusion: Using social media while in a shelter-in-place or lockdown could have a negative impact on the emotional and mental health of some of the population. To support policy and practice in strengthening mental health care in the community, social media could be used to deliver practical advice on coping and stress management. Communication with the public should be strengthened by unambiguous and clear messages and clear communication pathways. We should be looking at alternative ways of staying connected.


BMJ Open ◽  
2017 ◽  
Vol 7 (11) ◽  
pp. e017856 ◽  
Author(s):  
Tom Bourne ◽  
Bavo De Cock ◽  
Laure Wynants ◽  
Mike Peters ◽  
Chantal Van Audenhove ◽  
...  

ObjectiveHow adverse outcomes and complaints are managed may significantly impact on physician well-being and practice. We aimed to investigate how depression, anxiety and defensive medical practice are associated with doctors actual and perceived support, behaviour of colleagues and process issues regarding how complaints investigations are carried out.DesignA survey study. Respondents were classified into three groups: no complaint, recent/current complaint (within 6 months) or past complaint. Each group completed specific surveys.SettingBritish Medical Association (BMA) members were invited to complete an online survey.Participants95 636 members of the BMA were asked to participate. 7926 (8.3%) completed the survey, of whom 1780 (22.5%) had no complaint, 3889 (49.1%) had a past complaint and 2257 (28.5%) had a recent/current complaint. We excluded those with no complaints leaving 6144 in the final sample.Primary outcomes measuresWe measured anxiety and depression using the Generalised Anxiety Disorder Scale 7 and Physical Health Questionnaire 9. Defensive practice was assessed using a new measure for avoidance and hedging.ResultsMost felt supported by colleagues (61%), only 31% felt supported by management. Not following process (56%), protracted timescales (78%), vexatious complaints (49%), feeling bullied (39%) or victimised for whistleblowing (20%), and using complaints to undermine (31%) were reported. Perceived support by management (relative risk (RR) depression: 0.77, 95% CI 0.71 to 0.83; RR anxiety: 0.80, 95% CI 0.74 to 0.87), speaking to colleagues (RR depression: 0.64, 95% CI 0.48 to 0.84 and RR anxiety: 0.69, 95% CI 0.51 to 0.94, respectively), fair/accurate documentation (RR depression: 0.80, 95% CI 0.75 to 0.86; RR anxiety: 0.81, 95% CI 0.75 to 0.87), and being informed about rights (RR depression 0.96 (0.89 to 1.03) and anxiety 0.94 (0.87 to 1.02), correlated positively with well-being and reduced defensive practice. Doctors worried most about professional humiliation following a complaint investigation (80%).ConclusionPoor process, prolonged timescales and vexatious use of complaints systems are associated with decreased psychological welfare and increased defensive practice. In contrast, perceived support from colleagues and management is associated with a reduction in these effects.


2021 ◽  
Vol 12 ◽  
Author(s):  
Paolo Deluca ◽  
Michelle Foley ◽  
Jacklyn Dunne ◽  
Andreas Kimergård

Objective: Investigate the psychometric properties of the Severity of Dependence Scale (SDS) for codeine and its association with aberrant codeine related behaviors.Design: A voluntary and uncompensated cross-sectional online survey.Setting: Online population (≥18 years).Respondents: Two hundred and eighty-six respondents (66% women) who had used codeine containing medicines in the last 3 months and were living in the UK.Results: Of the respondents (mean age = 35.4 years, SD = 12.5), more than half were employed. Only 3.5% respondents reported no income. The majority of respondents (45.1%) primarily obtained prescription-only codeine from a consultation with a health professional, whilst 40.9% mainly purchased “over-the-counter” codeine containing medicines in a pharmacy without a medical prescription. Principal component analysis indicated a single factor solution accounting for 75% of the variance. Factor loadings ranged from 0.83 to 0.89. Cronbach's Alpha was high (α = 0.92). Several behaviors relating to codeine use were found to significantly predict probable codeine dependence. These included: daily codeine use in the last 3 months (OR = 66.89, 95% CI = 15.8–283.18); tolerance to codeine (OR = 32.14, 95% CI = 13.82–74.75); problems with role responsibility due to intoxication (OR = 9.89, 95% CI = 4.95–19.78); having sought advice on the internet to manage codeine use (OR = 9.56, 95% CI = 4.5–20.31); history of alcohol or drug treatment (OR = 3.73, 95% CI = 1.88–7.43).Conclusions: The SDS was acceptable and feasible to use to assess probable psychological codeine dependence in an online sample of people using codeine containing medicines. SDS scores were associated with behaviors known to be indicators of codeine dependence. Studies are needed in well-defined populations of people who use codeine to test the different aspects of psychometry of the scale compared against “gold standard” criterion [a diagnosis according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)].


2018 ◽  
Vol 72 (10) ◽  
pp. 880-887 ◽  
Author(s):  
Kate L Mandeville ◽  
Rose-Marie Satherley ◽  
Jennifer A Hall ◽  
Shailen Sutaria ◽  
Chris Willott ◽  
...  

BackgroundLittle is known about the political views of doctors in the UK despite doctors' importance in the functioning of the National Health Service (NHS).MethodsThis is a survey-based, cross-sectional study in which we asked questions about voting behaviour in 2015 and 2017 UK general elections and 2016 referendum on leaving the European Union (EU) (Brexit), and questions relating to recent health policies.Results1172 doctors (45.1% women) from 1295 responded to an online survey. 60.5% described their political views as ‘left-wing’ and 62.2% described themselves as ‘liberal’. 79.4% of respondents voted to remain in the EU in the 2016 referendum compared with 48.1% of voters as a whole (χ2=819.8, p<0.001). 98.6% of respondents agreed that EU nationals working in the NHS should be able to remain in the UK after Brexit. The median score for the impact of Brexit on the NHS on a scale of 0 (worst impact) to 10 (best impact) was 2 (IQR=1–4). Most respondents agreed with the introduction of minimum alcohol pricing in the UK (73.9%), charging patients who are not eligible for NHS treatment for non-urgent care (70.6%) and protecting a portion of national spending for the NHS (87.1%). 65.8% thought there was too much use of NHS-funded private sector provision in their medical practice. Specialty, income and grade were associated with divergent opinions.ConclusionsUK doctors are left-leaning and liberal in general, which is reflected in their opinions on topical health policy issues. Doctors in the UK voted differently from the general electorate in recent polls.


BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e027525 ◽  
Author(s):  
Paula Booth ◽  
Ian P Albery ◽  
Sharon Cox ◽  
Daniel Frings

ObjectivesThis study explored the potential for e-cigarette advertisements to (1) enhance attitudes towards cigarettes and/or (2) reduce barriers to e-cigarettes uptake. The study tested whether exposure to an online electronic cigarette advertisement changed attitudes towards cigarettes and e-cigarettes in smokers, non-smokers, e-cigarette users and dual users (smokers who also use e-cigarettes).DesignCross-sectional studySettingOnline surveyParticipantsAdults (n=964) aged 18 to 65 years old (M=36 years, SD=11.6) from the UK and USA. Participants were grouped into current non-smokers, e-cigarette users, dual users and smokers.InterventionsParticipants viewed 1 of 15 randomly assigned online e-cigarette advertisements.Primary measuresThree single seven-point Likert scales measuring health, desirability, social acceptability were completed pre and post advertisement exposure.ResultsPost exposure all smoking groups showed a decrease or no change in how socially acceptable or desirable they rated cigarettes. Paradoxically, dual users rated cigarettes as being significantly healthier after viewing the advertisement (p=0.01) while all other smoking group ratings remained the same. There was an increase or no change in how all smoking groups perceived the healthiness and desirability of e-cigarettesConclusionsWe observed no evidence that exposure to an e-cigarette advertisement renormalises or encourages smoking in smokers, non-smokers or e-cigarette users. However, there is some indication that viewing an e-cigarette advertisement may increase duals users’ perceptions of the health of smoking.


BMJ Open ◽  
2019 ◽  
Vol 9 (9) ◽  
pp. e030262 ◽  
Author(s):  
Rachel Stockley ◽  
Rosemary Peel ◽  
Kathryn Jarvis ◽  
Louise Connell

ObjectivesTo survey the reported content, frequency and duration of upper limb treatment provided by occupational and physiotherapists for people after stroke in the UK.DesignA cross-sectional online survey was used. Description and analysis of the data were based on items from the Template for Intervention Description and Replication (Who, Where, What and How much).SettingThe online survey was distributed via professional and social networks to UK-based therapists.ParticipantsRespondents were occupational or physiotherapists currently working clinically in the UK with people after stroke. Over the 6 week data collection period, 156 respondents opened the survey, and 154 completed it. Respondents comprised 85 physiotherapists and 69 occupational therapists.ResultsRespondents reported treating the upper limb a median of three times a week (range: 1 to 7) for a mean of 29 min (SD: 18). Most (n=110) stated this was supplemented by rehabilitation assistants, family and/or carers providing additional therapy a median of three times a week (range 1 to 7). Functional training was the most commonly reported treatment for people with mild and moderate upper limb deficits (>40%). There was much less consistency in treatments reported for people with severe upper limb deficits with less than 20% (n=28) reporting the same treatments.ConclusionsThis study provides a contemporaneous description of reported therapy in the UK for people with upper limb deficits after stroke and a detailed template to inform standard therapy interventions in future research. Several evidence-based therapies were reported to be used by respondents (eg, constraint induced movement therapy), but others were not (eg, mental imagery). The findings also highlight that the current reported provision of upper limb therapy is markedly less than what is likely to be effective. This underlines an urgent need to configure and fund services to empower therapists to deliver greater amounts of evidence-based treatment for people with upper limb deficits after stroke.


2017 ◽  
Vol 102 (9) ◽  
pp. 1244-1247 ◽  
Author(s):  
Karl Mercieca ◽  
Brett Drury ◽  
Archana Bhargava ◽  
Cecilia Fenerty

AimsTo evaluate, describe and quantify the diversity in postoperative antimetabolite administration and bleb needling practices among glaucoma specialists performing trabeculectomy surgery within the UK and Ireland.MethodsA cross-sectional online survey was distributed to all consultant glaucoma specialists who are on the United Kingdom and Eire Glaucoma Society (UKEGS) contact list. Participants were asked specific questions about their current practices for post-trabeculectomy antimetabolite administration followed by questions directly related to bleb needling procedures.Results60 (83%) of UKEGS glaucoma subspecialty consultants completed the survey. 70% of respondents administered 5-fluorouracil (5-FU) in their clinic room while 30% used a separate treatment room. Doses of 5-FU varied considerably but 70% used 5 mg as standard. Techniques used to reduce corneal toxicity included precipitation with amethocaine (44%) or benoxinate (14%), saline wash (14%) and modified injection technique (8%). Topical antibiotics and/or betadine were used to prevent infection following 5-FU injection in just over 50%. Bleb needling was exclusively performed in operating theatre by 56% of respondents and solely at the slit lamp in the clinic room by 12%. A further 30% used a combination of both theatre and outpatient clinic rooms. Anti-metabolites used were 5-FU (72%) and mitomycin C (22%) with 12% using either of the two substances.ConclusionsThere is a significantly wide variety of current practices for antimetabolite administration and bleb needling within the UK and Ireland. This may be influenced by a glaucoma surgeon’s specific experience and audit results as well as particular clinical set-up, availability of antimetabolite and clinic room space.


BJPsych Open ◽  
2020 ◽  
Vol 6 (6) ◽  
Author(s):  
Mark Shevlin ◽  
Orla McBride ◽  
Jamie Murphy ◽  
Jilly Gibson Miller ◽  
Todd K. Hartman ◽  
...  

Background The COVID-19 pandemic has created an unprecedented global crisis, necessitating drastic changes to living conditions, social life, personal freedom and economic activity. No study has yet examined the presence of psychiatric symptoms in the UK population under similar conditions. Aims We investigated the prevalence of COVID-19-related anxiety, generalised anxiety, depression and trauma symptoms in the UK population during an early phase of the pandemic, and estimated associations with variables likely to influence these symptoms. Method Between 23 and 28 March 2020, a quota sample of 2025 UK adults aged 18 years and older, stratified by age, gender and household income, was recruited by online survey company Qualtrics. Participants completed standardised measures of depression, generalised anxiety and trauma symptoms relating to the pandemic. Bivariate and multivariate associations were calculated for demographic and health-related variables. Results Higher levels of anxiety, depression and trauma symptoms were reported compared with previous population studies, but not dramatically so. Anxiety or depression and trauma symptoms were predicted by young age, presence of children in the home, and high estimates of personal risk. Anxiety and depression were also predicted by low income, loss of income and pre-existing health conditions in self and others. Specific anxiety about COVID-19 was greater in older participants. Conclusions This study showed a modest increase in the prevalence of mental health problems in the early stages of the pandemic, and these problems were predicted by several specific COVID-related variables. Further similar surveys, particularly of those with children at home, are required as the pandemic progresses.


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