Behavioral inflexibility in fragile X syndrome: Accounts from caregivers and self-advocates.

Introduction: Behavioral difficulties in individuals with fragile X Syndrome (FXS) are one of the primary reasons families seek medical and psychological support. Among these, behavioral inflexibility is very common, and when left untreated, can negatively impact quality of life for the individuals with FXS and their families. Behavioral inflexibility refers to the difficulty in changing one's behaviors based on environmental demands or social contexts, thus impeding daily functioning, opportunities for learning, and social interactions. In addition to the individual and family impact, behavioral inflexibility is often recognized as a defining phenotype of FXS and appears to be specific to FXS when compared to other genetic forms of intellectual disability. Despite the pervasiveness and severity of behavioral inflexibility in FXS, there are limited measures that adequately assess behavioral inflexibility in FXS. Methods: We conducted semi-structured virtual focus groups with 22 caregivers, 3 self-advocates, and 1 professional to gather key stakeholders' perspectives on and experiences of inflexible behavior observed in FXS. Audio-recordings from focus groups were transcribed using NVivo, then verified and coded. Two trained professionals reviewed codes to extract primary themes. Results: Six themes were extracted: (1) Intolerance of change, (2) Intolerance to uncertainty, (3) Repetitive interests and behaviors, (4) Family impact, (5) Change in behavior across the lifespan, and (6) Impact of the COVID pandemic. Our findings show common examples of these themes included intolerance to disruption to routine, perseverative questioning, watching the same things over and over, and caregivers having to extensively pre-plan for events. Discussion: The purpose of the current study was to gain key stakeholders' perspectives via focus groups to elicit information and understand patterns of inflexible behaviors in FXS, with the goal of developing a disorder-specific measure to accurately assess behavioral inflexibility across the lifespan and in response to treatment. We were able to capture several phenotypic examples of behavioral inflexibility in FXS as well as their impact on individuals with FXS and their families. The wealth of information gained through our study will aid in our next steps of item generation for measure development of Ratings of Inflexibility in Genetic Disorders associated with Intellectual Disability - Fragile X Syndrome (RIGID-FX).

The Fall of Perseverance and Rise of Indomitable Spirit within Taekwon-Do during COVID-19

Background. Taekwon-Do, a South Korean martial art and combat sport teaches hundreds of physical skills through a stratified curriculum. The highest learning objectives of Taekwon-Do are, however, its five tenets (courtesy, integrity, perseverance, self-control, and indomitable spirit). Unlike the physical aspects of Taekwon-Do practice, there are no direct assessment tools that can determine if a student has acquired and utilized the tenets. The challenges of the COVID-19 pandemic may provide a unique opportunity to assess the acquisition of some of the tenets of Taekwon-Do. Problem and Aim. This study aims to provide an indirect method of assessing students' adoption of some of Taekwon-Do's tenets by understanding how these ideals may enable Taekwon-Do practitioners to overcome physical and emotional challenges in their daily lives. Methods. The research methodology utilizes an autoethnographic research design that correlates the author's application of the tenets of Taekwon-Do to his mental and spiritual health successes after suffering through the COVID-19 pandemic and life-altering physical injuries. Results. COVID-19, like the author's injuries, provides an indirect and qualitative assessment opportunity for two tenets of Taekwondo (perseverance and indomitable spirit). Conclusion. While indirect assessment is a viable and established pedagogical means of assessment, quantitative measurement tools may be more persuasive to prove the effectiveness of the tenets of Taekwon-Do.

Diabetes self-management during the covid-19 pandemic and its associations with covid-19 anxiety syndrome, depression, and health anxiety

Objective: The effects of the covid-19 pandemic on mental health have been profound. There is a complex bi-directional relationship between mental health and diabetes self-care. We examined whether covid-19 anxiety syndrome, depression and health anxiety predicted domains of diabetes self-management and investigated whether greater covid-19 anxiety syndrome would independently contribute to poorer diabetes self-care. Methods: We sent surveys to patients attending a London hospital diabetes clinic. Participants (n = 369, mean age 50.5 years, 52.9% female) completed the diabetes self-management questionnaire (DSMQ), the covid-19 anxiety syndrome scale (C-19ASS), which measures perseveration and avoidant maladaptive coping behaviour, assessed with measures of co-existent depression and health anxiety, controlling for age, gender, and social deprivation. Clinical data including pre-and post-lockdown HbA1c measures were obtained from hospital records. Results: Depression scores were much higher than pre-pandemic reports, although the prevalence of covid-19 anxiety syndrome was not higher than measured elsewhere. Both pre-existing health anxiety and depression independently predicted poorer measures of diabetes care, as did lower socioeconomic rank. However, avoidant covid-19 anxiety responses were independently associated with higher diabetes self-care scores. HbA1c levels improved significantly over the UK lockdown in our cohort (p < 0.001). Conclusion: During the height of lockdown our research suggests that avoidant coping behaviours characteristic of the covid-19 anxiety syndrome could work to improve diabetes self-care, at least in the short term. We recommend screening for depression, and we should be aware of the significant minority of patients with covid-19 anxiety syndrome who may now find it difficult to re-engage with face-to- face clinic opportunities.

“You cannot pour from an empty cup!”: child well-being service providers’ and policymakers’ professional supervision, coping and well-being during COVID-19

Purpose>This paper aims to present findings from 440 responses regarding the experiences of supervision, coping and well-being of 83 service providers and policymakers from eight countries working to support children’s well-being during the COVID-19 pandemic.Design/methodology/approach>A smartphone survey hosted on a custom-built app was used. The data were analysed using qualitative content analysis. The data were gathered in the last quarter of 2020.Findings>While most respondents described the supervision they received as “useful” – both personally and professionally – and reported several characteristics of effective supervision practices, concerns about not receiving optimal support were also voiced. Respondents shared a range of stress management and other self-care practices they used but also revealed their difficulties optimally managing the stresses and anxieties during the COVID-19 pandemic. As a result, some respondents shared they were feeling helpless, unmotivated and unproductive. Yet, overall, responses were imbued with messages about hope, perseverance and self-compassion.Originality/value>Using a bespoke smartphone app, rich and intimate insights were generated in real time from a wide range of professionals across high- and low- and middle-income countries – indicating the need to better support their well-being and service delivery.

Teaching in and beyond pandemic times

In the foreword, Jansen points out that the purpose was not to publish a standard academic book referring to research elements, but rather to use a narrative form to capture teachers' stories while simultaneously dealing with issues peculiar to distance learning: maintaining effective contact with learners;finding inventive ways of dealing with unequal learner access to reliable data and devices;the effects - on the transition to online learning - of varying and age-related levels of technological competence present among teachers;post-lockdown emotional consequences to teachers of re-entry into the system and teacher deployment in cases where colleagues with comorbidities are allowed to work from home. Millar describes this overwhelming transition process that required teachers to be innovative, to develop new technological skills and to assist the learners while fulfilling various roles such as spouse, partner, advisor and Zoom controller. The topics are pressure;pedagogy;preparation;pioneers;poverty;privilege;perspective;parents and parent teachers;peer teaching;perseverance and pastoral care.

Patients' Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts.

BACKGROUND: The impact of qualitative olfactory disorders is underestimated. Parosmia, the distorted perception of familiar odors, and phantosmia, the experience of odors in the absence of a stimulus, can arise following postinfectious anosmia, and the incidences of both have increased substantially since the outbreak of COVID-19. OBJECTIVE: The aims of this study are to explore the symptoms and sequalae of postinfectious olfactory dysfunction syndrome using unstructured and unsolicited threads from social media, and to articulate the perspectives and concerns of patients affected by these debilitating olfactory disorders. METHODS: A thematic analysis and content analysis of posts in the AbScent Parosmia and Phantosmia Support group on Facebook was conducted between June and December 2020. RESULTS: In this paper, we identify a novel symptom, olfactory perseveration, which is a triggered, identifiable, and usually unpleasant olfactory percept that persists in the absence of an ongoing stimulus. We also observe fluctuations in the intensity and duration of symptoms of parosmia, phantosmia, and olfactory perseveration. In addition, we identify a group of the most common items (coffee, meat, onion, and toothpaste) that trigger distortions; however, people have difficulty describing these distortions, using words associated with disgust and revulsion. The emotional aspect of living with qualitative olfactory dysfunction was evident and highlighted the detrimental impact on mental health. CONCLUSIONS: Qualitative and unsolicited data acquired from social media has provided useful insights into the patient experience of parosmia and phantosmia, which can inform rehabilitation strategies and ongoing research into understanding the molecular triggers associated with parosmic distortions and research into patient benefit.

The Persian COVID-19 Anxiety Syndrome Scale (C-19ASS): Psychometric properties in a general community sample of Iranians.

There is a potential for a long-lasting psychological and social impact from the COVID-19 pandemic. Recently, the COVID-19 Anxiety Syndrome Scale (C19-ASS) has been developed, which measures individuals' coping mechanisms in relation to the fear or threat of COVID-19. The C19-ASS was developed and has been used so far only in Western samples. Further psychometric evaluation is needed in ethnically diverse samples. Therefore, the current study sought to test the psychometric properties in a large sample of Iranians (n = 1429; female = 52.1%; Mean age = 35.83, ±12.89) who completed a cross-sectional survey. Exploratory factor analysis revealed that the Persian C19-ASS has a two-factor structure corresponding to the perseveration and avoidance subscales of the original scale. Confirmatory factor analyses also supported a two-factor solution, which showed a firm model fit and high internal consistencies. Furthermore, it showed excellent divergent validity from generalized anxiety, indicating that it is concerned explicitly with COVID-19, supported by correlational analyses and exploratory factor analysis. Test of incremental validity indicated the Persian C19-ASS explained more variance in functional impairment and COVID-19 anxiety than the gender, marital and educational status, generalized anxiety, neuroticism, openness, consciousness and having lost someone close due to COVID-19. Also, based on a mediation test, it was found that C19-ASS mediates the relationship between the Big Five personality traits (except openness and consciousness) and health anxiety, generalized anxiety, depression and COVID-19 anxiety. Overall, the current findings provide further evidence for the construct of the COVID-19 anxiety syndrome. The COVID-19 anxiety syndrome is discussed in light of the S-REF model that provides an explanatory framework for this pandemic-related construct.