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The perception, understanding and experience of flourishing in young people living with chronic pain: A Q-methodology study
Much research has adopted a deficits-based approach to chronic pain, neglecting the study of flourishing. Using a Q-methodological framework, this study sought to explore how individuals experience, understand and perceive flourishing in the context of young people living with chronic pain. Fifty-four individuals completed a Q-sorting task, indicating their level of agreement and disagreement with 52 statements. Q-analysis generated three factors that represented clear viewpoints of participants: ‘Pain is not a barrier to flourishing’, ‘Adapting to a new life’ and ‘Adopting a positive perspective’. Factors expressed the viewpoints that flexibility is key to enjoying life despite chronic pain, while resilience, management of stressors, acceptance and problem-solving may be required to flourish with chronic pain. Participants’ understanding of flourishing also focused on the appreciation and enjoyment of life and achievements. This study provides a useful contribution towards furthering our understanding of flourishing in young people living with chronic pain.
The experience of seeking and accessing help from mental health services among young people of Eastern European backgrounds: A qualitative interview study.
OBJECTIVES: Most lifetime mental health problems (MHP) start before the age of 25. Yet young people-particularly those of minority backgrounds-often do not seek or access professional help. In the UK, young people of Eastern European (EE) backgrounds represent a large minority group; however, little is known about their experiences of MHP and help-seeking. In this study, we aim to understand the help-seeking process from the perspectives of EE young people. DESIGN: We used a qualitative study design with semi-structured individual interviews. The results were analysed using reflexive thematic analysis. METHOD: Twelve young people (18-25 years) of EE backgrounds, living in Oxfordshire, UK, took part. All participants had experienced a severe MHP and were identified in the community. RESULTS: EE young people's experiences of MHP and help-seeking were driven by a sense of being caught between different cultures and simultaneously needing to navigate the potentially contrasting expectations of both cultures. This process was reinforced or tempered by the perceived continuing influence of young people's families, that is, families with more open views about MHP made it easier for young people to navigate through the process of help-seeking. Young people's internalised cultural and familial beliefs about MHP affected their decision-making when experiencing difficulties, their levels of trust in services, and perceived sense of resourcefulness and ability to cope. CONCLUSIONS: Recognising and responding to the cultural tension that young people of EE backgrounds may experience can help us to develop more accessible and inclusive mental health services.
Navigating Pubertal Goldilocks: The Optimal Pace for Hierarchical Brain Organization.
Adolescence is a timed process with an onset, tempo, and duration. Nevertheless, the temporal dimension, especially the pace of maturation, remains an insufficiently studied aspect of developmental progression. The primary objective is to estimate the precise influence of pubertal maturational tempo on the configuration of associative brain regions. To this end, the connection between maturational stages and the level of hierarchical organization of large-scale brain networks in 12-13-year-old females is analyzed. Skeletal maturity is used as a proxy for pubertal progress. The degree of maturity is defined by the difference between bone age and chronological age. To assess the level of hierarchical organization in the brain, the temporal dynamic of closed eye resting state high-density electroencephalography (EEG) in the alpha frequency range is analyzed. Different levels of hierarchical order are captured by the measured asymmetry in the directionality of information flow between different regions. The calculated EEG-based entropy production of participant groups is then compared with accelerated, average, and decelerated maturity. Results indicate that an average maturational trajectory optimally aligns with cerebral hierarchical order, and both accelerated and decelerated timelines result in diminished cortical organization. This suggests that a "Goldilocks rule" of brain development is favoring a particular maturational tempo.
Empathy and the work of clinical psychiatrists: narrative review
Clinical research suggests that empathy is associated with better clinical outcomes in various areas of medical care, raising the question of whether a similar effect occurs in psychiatry. The aim of this review is to explore philosophical, neuroscientific and psychological perspectives on the concept of empathy in the context of the day-today work of clinical psychiatrists. The definition of empathy is outlined and sociodemographic factors, working conditions and psychiatrists’ beliefs that can potentially affect empathy in clinical encounters are explored; educational and training aspects are also reviewed. The review concludes suggesting that research on empathy is needed to understand contextual, training and relational factors that could benefit mental healthcare as well as the working conditions of clinical psychiatrists, both inextricably linked.
Commentary: Closing the gender gap in depression through the lived experience of young women - a response to 'Don't mind the gap: Why do we not care about the gender gap in mental health?', Patalay and Demkowicz (2023).
Most mental health research largely ignores or minimises gender and age differences in depression. In 'Don't mind the gap: Why do we not care about the gender gap in mental health?', Patalay and Demkowicz identify a dearth of research on the causal factors of depression in young women. They attribute this to an over-reliance on biological accounts of gender differences in depression. Patalay and Demkowicz conclude that a person-centred approach that meaningfully engages with the reports of young women with depression is more likely to expose the social drivers of depression that impact this group. This commentary focuses on Patalay and Demkowicz's call to examine the patient's lived experience. We argue that there is an urgent need to reflect upon the methodologies involved in examining lived experience and how they can be best utilised. Ultimately, we advocate for an approach known as 'phenomenological psychopathology', through a phenomenological investigation of depression in young women, we can go some way towards closing the gender gap.
‘Isn’t Everyone a Little OCD?’ The Epistemic Harms of Wrongful Depathologization
This article develops the concept of wrongful depathologization, in which a psychiatric disorder is simultaneously stigmatized (because of sanist attitudes towards mental illness) and trivialized (as it is not considered a “proper” illness). We use OCD as a case study to argue that cumulatively these two effects generate a profound epistemic injustice to OCD sufferers, and possibly to those with other mental disorders. We show that even seemingly positive stereotypes attached to mental disorders give rise to both testimonial injustice and wilful hermeneutical ignorance. We thus expose an insidious form of epistemic harm that has been overlooked in the literature.
The epistemic harms of empathy in phenomenological psychopathology
Jaspers identifies empathic understanding as an essential tool for grasping not the mere psychic content of the condition at hand, but the lived experience of the patient. This method then serves as the basis for the phenomenological investigation into the psychiatric condition known as ‘Phenomenological Psychopathology’. In recent years, scholars in the field of phenomenological psychopathology have attempted to refine the concept of empathic understanding for its use in contemporary clinical encounters. Most notably, we have Stanghellini’s contribution of ‘second-order’ empathy and Ratcliffe’s ‘radical empathy’. Through this paper, we reject the pursuit of a renewed version of ‘empathic understanding’, on the grounds that the concept is fundamentally epistemically flawed. We argue that ‘empathic understanding’ risks (1) error, leading to misdiagnosis, mistreatment and an overall misunderstanding of the experience at hand, (2) a unique form of epistemic harm that we call ‘epistemic co-opting’ and (3) epistemic objectification. To conclude, we propose that empathic understanding ought to be replaced with a phenomenological account of Fricker’s virtuous listening.
Co-design and evaluation of a youth-informed organisational tool to enhance trauma-informed practices in the UK public sector: a study protocol
IntroductionA trauma-informed approach (TIA) means working with awareness that people’s histories of trauma may shape the way they engage with services, organisations or institutions. Young people with adverse childhood experiences may be at risk of retraumatisation by organisational practices in schools and universities and by employers and health agencies when they seek support. There are limited evidence-based resources to help people working in the public sector to work with adolescents in trauma-informed ways and the needs of adolescents have not been central in resource development. This study contributes to public sector capacity to work in trauma-informed ways with adolescents by codesigning and evaluating the implementation of a youth-informed organisational resource.Methods and analysisThis is an Accelerated Experience-based Co-design (AEBCD) Study followed by pre–post evaluation. Public sector organisations or services, and adolescents connected with them, will collaboratively reflect on lived experience data assembled through creative arts practice, alongside data from epidemiological national data sets. These will present knowledge about the impact of adverse childhood experiences on adolescents’ mental health (stage 1). Collaboratively, priorities (touch points) for organisational responses will be identified (stage 2), and a low-burden resource will be codesigned (stage 3) and offered for implementation (stage 4) and evaluation (stage 5) in diverse settings. The study will provide insights into what adolescents and public sector organisations in the UK want from a TIA resource, the experience of services/organisations in implementing this and recommendations for resource development and implementation.Ethics and disseminationThe UK National Health Service Health Research Authority approved this study (23/WM/0105). Learning will be shared across study participants in a workshop at the end of the study. Knowledge products will include a website detailing the created resource and a youth-created film documenting the study process, the elements of the codesigned resource and experiences of implementation. Dissemination will target academic, healthcare, education, social care, third sector and local government settings via knowledge exchange events, social media, accessible briefings, conference presentations and publications.
A population-level post-screening treatment cost framework to help inform vision screening choices for children under the age of seven.
PURPOSE/BACKGROUND: Visual acuity (VA) screening in children primarily detects low VA and amblyopia between 3 and 6 years of age. Photoscreening is a low-cost, lower-expertise alternative which can be carried out on younger children and looks instead for refractive amblyopia risk factors so that early glasses may prevent or mitigate the conditions. The long-term benefits and costs of providing many children with glasses in an attempt to avoid development of amblyopia for some of them needs clarification. This paper presents a framework for modeling potential post-referral costs of different screening models once referred children reach specialist services. METHODS: The EUSCREEN Screening Cost-Effectiveness Model was used together with published literature to estimate referral rates and case mix of referrals from different screening modalities (photoscreening and VA screening at 2, 3-4 years and 4-5 years). UK 2019-20 published National Health Service (NHS) costings were used across all scenarios to model the comparative post-referral costs to the point of discharge from specialist services. Potential costs were compared between a) orthoptist, b) state funded ophthalmologist and c) private ophthalmologist care. RESULTS: Earlier VA screening and photoscreening yield higher numbers of referrals because of lower sensitivity and specificity for disease, and a different case mix, compared to later VA screening. Photoscreening referrals are a mixture of reduced VA caused by amblyopia and refractive error, and children with amblyopia risk factors, most of which are treated with glasses. Costs relate mainly to the secondary care providers and the number of visits per child. Treatment by an ophthalmologist of a referral at 2 years of age can be more than x10 more expensive than an orthoptist service receiving referrals at 5 years, but outcomes can still be good from referrals aged 5. CONCLUSIONS: All children should be screened for amblyopia and low vision before the age of 6. Very early detection of amblyopia refractive risk factors may prevent or mitigate amblyopia for some affected children, but population-level outcomes from a single high-quality VA screening at 4-5 years can also be very good. Total patient-journey costs incurred by earlier detection and treatment are much higher than if screening is carried out later because younger children need more professional input before discharge, so early screening is less cost-effective in the long term. Population coverage, local healthcare models, local case-mix, public health awareness, training, data monitoring and audit are critical factors to consider when planning, evaluating, or changing any screening programme.