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Chapter 9 considers how the experience of illness is represented linguistically, focussing on two contexts. In the first case study, collocational patterns were examined in order to show how people represented the word anxiety. Different patterns around anxiety were grouped together in order to identify oppositional pairs of representation (e.g., medicalising/normalising). The second case study involved an examination of the ways in which cancer was constructed in a corpus of interviews with and online forum posts by people with cancer, family carers, and healthcare professionals. Using a combination of manual analysis and corpus searches, we considered how metaphors were used to convey a sense of empowerment or disempowerment in the experience of cancer. More specifically, the analysis of metaphors around cancer revealed insights into people’s identity construction and the relationships between doctors and patients.
A pressing need exists to understand how, when, and why to adjust and build upon urban environmental policies that can influence a city’s capacity to foster and enact climate adaptation and mitigation. The objective of this book has been to define what we can learn from past urban environmental crises and resulting policy transitions that might be applicable to understand how climate change will manifest as crises in cities and what can be done to help accelerate urban climate action. In this chapter, we more directly turn our attention to learning what the book’s case studies reveal about these objectives. The case studies illustrate how existing urban environmental practices can be adjusted and enhanced to better grapple with the challenges of climate change. The analysis provides the groundwork for a set of innovative recommendations on how to perceive the urban climate crisis and how to consider new urban climate change policies. A key overall conclusion is that we should do all we can to learn from previous urban environmental crises as they will continue to inform us moving into the future.
Hidradenitis suppurativa (HS) is a chronic, painful inflammatory skin disease affecting 0.1% of the US population. Limited understanding of HS biology and ineffective treatments leave patients dissatisfied, facing misdiagnosis, and diagnostic delays. To address these challenges, the Rockefeller University Center for Clinical Translational Science, Clinical Directors Network, and the HS Foundation launched an initiative to foster engagement among stakeholders. Three full spectrum town halls (FSTH) were designed to engage patients, scientists, and clinicians bidirectionally. Topics spanned the translational research spectrum to amplify patient testimony, update the HS community on scientific and clinical research advances, and promote patient-centered research and care. The FSTH model aims to enhance empathy, foster trust, accelerate scientific discovery, and improve care. FSTH-2018 showcased patients’ experiences living with HS, the scientific and clinical state of the art, and tailored a new HS study to patient preferences. FSTH-2021 shared results of the study, including new insights into HS biology. FSTH-2023 highlighted best practices for outpatient surgical care of HS. Participant feedback underscored FSTH’s role in nurturing empathy and advancing discovery and patient engagement. FSTH serves as an effective model for uniting stakeholders, bridging gaps in knowledge and trust, and accelerating translational research to improve HS care.
Delphi studies allow for the generation of a consensus among experts. This has historically been professional experts in their field. This study aimed to obtain a consensus regarding the most important components of cognitive behavioural therapy (CBT) for depression not only for professional experts (therapists) but also for adult experts by experience. Perceptions of importance between therapists and experts by experience differed in multiple areas including content components such as behavioural activation and experiments, psychoeducation, and homework, which the latter did not agree were important. Experts by experience found several components relating to delivery process important which therapists did not, such as delivery method and session length. The strongest agreement from both groups involved the importance of positive therapist factors such as being non-judgemental, knowledgeable, understanding, and trustworthy. Both groups were in agreement on the importance of cognitive restructuring. Neither experts by experience nor therapists met consensus agreement on the inclusion of mindfulness as part of a wider CBT intervention for depression, being rated among the lowest components for both groups. Findings highlight several aspects of CBT content and delivery which may benefit from review in order to increase acceptability for recipients.
Key learning aims
(1) To identify what recipients and deliverers feel are the most important parts of a CBT intervention for depression.
(2) To compare these responses, and consider reasons why these similarities and differences may exist.
(3) To discuss ways in which these differences could impact acceptability and perceived efficacy of cognitive behavioural therapy.
(4) To reflect on ways gained knowledge could be used to consider ways to improve the delivery of cognitive behavioural therapy.
Suicidal ideation and behaviours are common among adolescents, posing significant challenges. Parents have a protective role in mitigating this risk, yet they often feel ill-equipped to support their adolescents, and their specific support needs are not well understood.
Aims
To explore the lived experiences of parents with suicidal adolescents and identify their support needs in the context of a therapist-assisted online parenting programme.
Method
Semi-structured interviews were conducted with three stakeholder groups based in Australia: nine parents with lived experience caring for a suicidal adolescent, five young people who experienced suicidality during adolescence and five clinical/research experts in youth mental health/suicide prevention. Inductive thematic analysis was used to analyse and interpret findings.
Results
Three key themes highlight the experience of parenting a suicidal adolescent: the traumatising emotional experience, uncertainty and parent empowerment. Six themes described parents’ support needs: validation and support, practical and tailored strategies, rebuilding the parent–adolescent relationship, parental self-care, flexible and accessible modes of delivery, and understanding non-suicidal self-injury.
Conclusions
Findings highlight key themes of parenting a suicidal adolescent and parental support needs. An online parenting programme could offer parents flexible access to evidence-based parenting strategies. Yet, a purely digital approach may not address the complexities of the parent-adolescent dynamic and provide adequate tailoring. As such, a hybrid approach incorporating therapist support can provide parents with both the compassionate support and practical guidance they seek.
This chapter of the handbook takes up the issue of moral development in adolescence. The authors’ wide-ranging discussion touches on how differences in temperament, gender, familial and peer relationships, and lived experience influence the timing and outcome of adolescent moral development. Regarding the role of temperament, for example, high-reactive individuals may be more prone to impulsive behavior that violates moral norms, whereas low-reactive individuals may be more likely to conform to moral norms because they are more sensitive to the threat of punishment. On the importance of interpersonal relationships, weak attachment to caregivers in adolescence is associated with impairments of empathy and a greater propensity for antisocial and immoral behavior. Peer influence is another key predictor of both antisocial and prosocial behavior in adolescence. Further, moral development in adolescence critically depends on the maturation of capacities for empathy and self-conscious emotion, a process that is shaped by the individual’s lived experience.
Residential treatment facilities for eating disorders are becoming increasingly common and purport to provide recovery-orientated care in a less restrictive environment than traditional hospital settings. However, minimal attention has focused on individuals’ lived experiences of these residential services.
Aims
This study explores participants’ lived experiences of care at Australia’s first residential facility for the treatment of eating disorders.
Method
Qualitative data were collected as part of a clinical evaluation (June 2021 to August 2023). Fifteen women participated in semi-structured interviews about their experience of treatment following discharge. Data were analysed with inductive reflexive thematic analysis.
Results
Three main themes were generated from the data that included participants’ journeys to treatment, experiences of treatment and the transitions associated with and following discharge. Cutting across these main themes were participants’ encounters of barriers, setbacks and hope. Participant experiences of residential treatment were complex and multifaceted, marked by inherent ideological dilemmas that arose in balancing standardised treatment protocols with person-centred and recovery-oriented care. Participants also spoke of reclaiming a sense of self and identity beyond their eating disorder, emphasising the importance of relationships and consistent and collaborative care.
Conclusions
Participant accounts of residential treatment emphasised the importance of holistic, person-centred and recovery-oriented care. Despite the complexities of treatment experiences, participant narratives underscored how recovery may be more about the reclamation of a sense of identity outside of the eating disorder than merely symptom improvement. As such, adopting person-centred and recovery-oriented treatment approaches within residential treatment settings may maximise individual autonomy and promote holistic recovery pathways.
This Element is the first monograph to focus on the presence and popularity of autofiction in contemporary theatre, a mode characterised by its mixture of autobiographical and fictional materials and generally associated with the cutting edge of literary fiction. To do so, it brings frameworks from literary and theatre studies to bear on a recent upsurge in plays that explicitly mobilise lived experience and its fictionalisation to political ends. Considering a comparative corpus of state-subsidised productions in Britain and Europe since the mid 2010s – both adaptations of literary works and plays written for the stage – this Element attends to autofiction's aesthetics and politics through its negotiation on stage of three conceptual binaries, each the focus of a section: fact/fiction, self/other, and inclusion/exclusion. By probing the mode's critical potential and pitfalls, it sheds light on the stakes of self-fictionalising practices in today's cultural markets and on the role of theatre therein.
Past experiences of mental healthcare which have been perceived as harmful can present significant barriers to accessing treatment again. This article draws upon research and lived experience to consider the ways in which conceptualisations of ‘trauma-informed care’ may better incorporate the role of iatrogenic harm, thus providing more acceptable and equitable treatment for those who have previously found treatment to be harmful. A more restorative approach is offered, founded in shared responsibility and compassionate relationships, to help minimise harms and create a more healing system for patients and clinicians alike.
This article explores the shift in mental health recovery from mere symptom management to a holistic approach via the CHIME framework. It delves into the author’s experience, beginning with the loss of his father, a war veteran with mental health struggles, at 16, thrusting him into the role of primary caregiver for his mother, who also battled mental health issues and eventually took her own life. These events spotlight the shortcomings of traditional mental health care and the urgent need for empathetic, multifaceted services. Advocating for co-creation in mental health services, the article outlines a transition towards a system that integrates recovery principles through stages from co-ideation to co-evaluation, emphasising holistic, person-centred care. It calls for a reimagined mental healthcare system that respects individual journeys and is rooted in co-creation, signalling a critical move towards systemic change.
Age-related changes can affect mental health, but aging-focused mental health research is limited. The objective was to identify the top 10 unanswered research questions on aging and mental health according to what matters most to aging Canadians. A steering group of experts-by-experience (e.g., older adults, caregivers, health and social care providers) guided three phases of a modified James Lind Alliance priority-setting partnership: (1) a broad national survey (n = 305) and a rapid literature scan; (2) a follow-up national survey (n = 703); and (3) four online workshops (n = 52) with a nominal group technique. Forty-two unique questions on aging and mental health resulted, of which 18 were determined to be answered by existing evidence. Of the 25 partially and unanswered questions, 10 were ranked as top priority. Findings can be used to prioritize future research, knowledge mobilization, and funding decisions, and to promote and support collaboration between longstanding siloed research and care fields.
Social contact refers to the facilitation of connection and interactions between people with and without mental health conditions. It can be achieved, for example, through people sharing their lived experience of mental health conditions, which is an effective strategy for stigma reduction. Meaningful involvement of people with lived experience (PWLE) in leading and co-leading anti-stigma interventions can/may promote autonomy and resilience. Our paper aimed to explore how PWLE have been involved in research and anti-stigma interventions to improve effective means of involving PWLE in stigma reduction activities in LMICs. A qualitative collective case study design was adopted. Case studies from four LMICs (China, Ethiopia, India and Nepal) are summarized, briefly reflecting on the background of the work, alongside anticipated and experienced challenges, strategies to overcome these, and recommendations for future work. We found that the involvement of PWLEs in stigma reduction is commonly a new concept in LMIC. Experienced and anticipated challenges were similar, such as identifying suitable persons to engage in the work and sustaining their involvement. Such an approach can be difficult because PWLE might be apprehensive about the negative consequences of disclosure. In many case studies, we found that long-standing professional connectedness, continued encouragement, information sharing, debriefing and support helped the participants’ involvement. We recommend that confidentiality of the individual, cultural norms and family concerns be prioritized and respected during the implementation. Taking into account socio-cultural contextual factors, it is possible to directly involve PWLEs in social contact-based anti-stigma interventions.
This study provides preliminary findings on the experiences of first responders during the opioid crisis and their viewpoints regarding whether clients with opioid use disorder deserve medical rehabilitation. Understanding associations between first responder experiences and viewpoints of client deservedness can help reduce stigma, improve compassionate care, and identify training gaps.
Methods:
Analyses were run with data from a nationwide survey of Emergency Medical Services-providers and law enforcement workers collected from August to November 2022 (N = 3836). The study used univariate statistics and ordered logistic regression to understand first responders’ experiences and viewpoints on client deservedness, as well as the relationship between the two.
Results:
Results show a negative correlation between responding to overdose calls and perceiving clients with opioid use disorder as deserving of medical rehabilitation. Law enforcement, males, and conservatives also had negative viewpoints. Conversely, having a friend experience addiction and believing addiction has had a direct impact on respondents’ lives predicted increases in client deservedness.
Conclusions:
Policy should focus on creating spaces where first responders can have positive interactions with people who use drugs or are in recovery. Better training is needed to help first responders manage on-the-job stressors and understand the complexities of addiction.
This chapter brings the sensory potentialities of material objects used in Roman ritualized activities into discourse concerning the nature and production of ancient religious knowledge. By combining perspectives derived from lived religion and material religion it is argued that religious agency should be understood as the product of the intertwining of human and more-than-human things within assemblages. Lived experiences of this production of agency, in turn, cause people to feel and consequently think in certain ways, ultimately producing what can be categorized as distal and proximal forms of religious knowledge. The chapter uses the example of the frieze of the Vestal Virgins from the Ara Pacis Augustae to argue that different forms of ancient religious knowledge were actively created through a multiplicity of lived experiences of ritualized action that brought human and more-than-human material things together, rather than existing only as something that was expressed through ritual behaviours. Exploring the Vestals’ experience of ritualized encounters with material things makes it possible to establish new understandings of the real-world lived experiences and identities of these priestesses, offering significant insights into how individualized forms of religious knowledge could be sustained even in the context of shared communal or public rituals.
From painted embellishments on altars and temples, marble flooring, dyed sacrificial ribbons and even the colouration of ritual animals, colour was an inescapable aspect of religious experience. Polychromy was not only decorative, it created a visual medium with which those navigating sacred spaces could interact, together with the written word and the language of shape and form. Colour could communicate to the ancient viewer associations of its source; the significance of both where its pigment or dyestuff was harvested and the journey it undertook, both in terms of manufacture and simple geography, in order to arrive before the observer. The very conception of ancient sight, with rays reaching from the eyes in a particularly haptic process of sensory feedback, meant that looking at colours was for the ancient viewer an experience in itself. How would visitors to the sacred spaces of the ancient world have ‘read’ the visual cues surrounding them, and how could the design of colours in ritual spaces influence the reactions and emotions of those witnessing sacred activity? This paper seeks to investigate and unpick some of the chromatic language found in religious spaces to better inform an understanding of ritual activity in Greco-Roman society.
Processions were among the earliest ‘moving pictures’ in which the brain could develop the cognitive process of ‘reading’ a landscape and embedding a memory through sensory experiences. Salutaris’ foundation, a text inscribed outside the theatre at Ephesus which records the organization of a ritual procession for Artemis, tends to be treated as a factual guide by scholars, rather than as aspirational script for an event: repeated legal clauses, claims of control and permanency, and the white marble on which it was carved, underwrite the vivid sensual experience and transiency of a ritual event. This paper endeavors to contextualize Salutaris’ foundation by incorporating directives of the text together with an analysis of the procession as a practical event and an emotional experience. As a sensorial experience, one can explore aspects of the performance that could not be controlled: the weather, the attitude of the audience, and the behaviour of the performers. Did aspirational directives of ritual behavior come to fruition in a ritual event? How did the experience of an event shape its role and meaning? This cognitive approach provides insights to both the ritual event and the ways that processions could be read by the viewer.
How do we experience ritual? What role does this experience play in the perception and codification memory? This chapter begins by considering the relationship between senses, cognition, and memory in ritual experiences, in particular, the complex interplay between ritual performance, emotions, and material objects, together with the limitations of script-based approaches to surviving accounts. Situating the volume within current debates on religious ritual in the ancient world from the perspectives of cognitive science of religion and sensory studies, this chapter explores how variability in ritual experiences can be assessed through cognitive approaches to rituals as lived experiences. Having outlined why this volume is timely, necessary, and how it contributes to challenging established views and furthering debate surrounding ritual experiences in the Roman world, the introduction also addresses the challenges of cognitive assessments and how these challenges are met across the volume, through a variety of different contexts and approaches. Lastly, the introduction briefly presents each of the five case studies, drawing on common themes and issues explored in each case study, and considering the global relevance and transdisciplinary applications of scholarship in this volume.
The study aimed to increase the understanding of the lived experience of patients during the acute phase of a coronavirus disease 2019 (COVID-19) infection.
Method:
A Web-based survey was distributed through established patient and public engagement and involvement groups and networks, social media, and by means of word of mouth. The survey covered questions relating to patient demographics, COVID-19 diagnosis, symptom profile, and patient experience during acute COVID-19.
Results:
The findings demonstrate the varying symptom profiles experienced by people in the acute stage of COVID-19 infection, with participants sharing how they managed care at home, and/or accessed medical advice. Findings also highlight themes that people were concerned with being unable to receive care and believed they needed to rely heavily on family, with extreme thoughts of death.
Conclusions:
Although the urgent threat to public health has been negated by efficacious vaccines and enhanced treatment strategies, there are key lessons from the lived experience of COVID-19 that should be used to prepare for future pandemics and public health emergencies.
This chapter explores some of the practices, interactions, and preferences of readers and fans as part of their lived comics cultures. Engagement with the medium has taken various forms, from casual readership and sharing titles among friendship groups in childhood, through to being a collector. Beyond simply involving reading comics, fandom can incorporate a range of other activities as part of an enhanced commitment to the medium, and various activities are touched upon. Further, it looks at how readers, both historically and today, have accessed their comics in varied formats and across many genres in Britain and the USA, linking their lived experience with production. In looking into these issues, the chapter engages with the work of various publishers, genres, and titles. It also engages with how reading comics and participating in fandom intersects with both age and gender, which this chapter adopts as lenses to look at constructions of childhood and comics reading. A final aspect of the chapter relates to how fan and reader interactions in these spaces and participation in activities often vary according to gender. Indeed, it can be argued that comics reading and collecting has been heavily gendered regarding both production and reception.