Lived Experience Perspectives Research Articles

Co-creation and recovery in mental health services: a lived experience perspective.

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.

Applying integrated enhanced cognitive behaviour therapy (I-CBTE) to severe and longstanding eating disorders (SEED) Paper 2: An in-depth case study for clinicians

BackgroundThis case study examines the application of Integrated Enhanced Cognitive Behavioural Therapy (I-CBTE) for a patient with severe, longstanding anorexia nervosa and multiple comorbidities, including organic hallucinosis, complex post-traumatic stress disorder (CPTSD), and severe self-harm. Such complex presentations often result in patients falling between services, which can lead to high chronicity and increased mortality risk. Commentaries from two additional patients who have recovered from severe and longstanding anorexia nervosa are included.Case studyThe patient developed severe anorexia nervosa and hallucinosis after a traumatic brain injury in 2000. Despite numerous hospitalisations and various psychotropic medications in the UK and France, standard treatments were ineffective for 17 years. However, Integrated Enhanced Cognitive Behaviour Therapy (I-CBTE) using a whole-team approach and intensive, personalised psychological treatment alongside nutritional rehabilitation proved effective.MethodsIn this paper, we describe the application of the I-CBTE model for individuals with severe, longstanding, and complex anorexia nervosa, using lived experience perspectives from three patients to inform clinicians. We also outline the methodology for adapting the model to different presentations of the disorder.OutcomesThe patient achieved and maintained full remission from her eating disorder over the last 6 years, highlighting the benefit of the I-CBTE approach in patients with complex, longstanding eating disorder histories. Successful treatment also saved in excess of £360 k just by preventing further hospitalisations and not accounting for the improvement in her quality of life. This suggests that this method can improve outcomes and reduce healthcare costs.ConclusionThis case study, with commentaries from two patients with histories of severe and longstanding anorexia nervosa, provides a detailed description of the practical application of I-CBTE for patients with severe and longstanding eating disorders with complex comorbidities, and extensive treatment histories. This offers hope for patients and a framework for clinicians to enhance existing treatment frameworks, potentially transforming the trajectory of those traditionally deemed treatment resistant.RecommendationsWe advocate the broader integration of CBT for EDs into specialist services across the care pathway to help improve outcomes for patients with complex eating disorders. Systematic training and supervision for multidisciplinary teams in this specialised therapeutic approach is recommended. Future research should investigate the long-term effectiveness of I-CBTE through longitudinal studies. Patient feedback on experiences of integrated models of care such as I-CBTE is also needed. In addition, systematic health economics studies should be conducted.

Language and terminology to describe transgender communities; Perspectives from people with lived experience

Background There is no consensus over the meaning of “transgender,” “trans and gender diverse,” and other terminology used to describe people with a gender different from the gender presumed or recorded for them at birth. We aimed to survey transgender (trans) individuals to understand lived experience perspectives on terminology. Methods An online cross-sectional survey of trans people currently living in Australia and aged ≥16 was conducted from June 2021 to April 2022. Demographic data and terminology preferences were ascertained through fixed-option and free-text questions. Results Of 1023 respondents with a median age of 30 years (IQR 24, 41), 37.1% were trans women, 34.9% were trans men, 27.6% were non-binary, and 0.4% had a culturally specific identity. There was no consensus regarding community-level terminology, with “trans/transgender and gender diverse” the most preferred term (21.9%), followed by “trans/transgender” (19.3%), and “gender diverse” (15.1%). The term “trans/transgender” was more preferred by trans women (27.9%), trans men (19.0%), respondents who had a history of or wanted gender-affirming hormone therapy (GAHT; 20.7%), and gender-affirming surgery (GAS; 20.9%), compared to non-binary respondents (8.2%), and respondents who did not want GAHT (4.9%) or GAS (13.9%). Three themes emerged from free-text responses regarding term preference: (1) Inclusivity, (2) Trans as a binary and medicalized experience, and (3) Societal understanding, accessibility, and destigmatization. Conclusion From Australian trans communities’ perspectives, the term “trans/transgender and gender diverse” was the most preferred community-level terminology to collectively describe people with a gender different from the gender presumed or recorded for them at birth. Further perspectives are needed from other cohorts internationally.

“All you’ve got to do is stop”: A Qualitative Examination of Gambling Stigma and Discrimination from the Perspective of Lived Experience

People with lived experience have drawn attention to gambling stigma as a harm in itself, justifying discrimination and exacerbating other harms. The gambling establishment’s response has reproduced individual responsibility by reducing stigma to a barrier to help-seeking. More recently, adapting to critiques of individual responsibility, the gambling establishment has expanded the issue to one of services and society. This paper identifies the structural dynamics that drive gambling stigma and discrimination from the perspective of lived experience. Semi-structured interviews were conducted with adults in Great Britain who had experienced gambling harm (n = 40). Several key themes were identified: (1) Harmless fun and individual responsibility; (2) Comparison with substance use; (3) The role of money; (4) Lack of parity in government policy; (5) Stereotypes of “typical” gamblers. The findings show the fundamental driver of stigma is the way commercial gambling functions and is enabled to function by the state, thus perpetuating the very conditions producing stigma in the first place. Stigma-reduction strategies that focus on changing individual behaviour or public information campaigns that tell people to get help early are insufficient: they are just another version of “responsible gambling,” where the individual is expected to do everything. Change requires addressing the unique features of gambling harm, stigma and discrimination, and the position the U.K. government allows commercial gambling to occupy.

Cochlear implantation for children with single-sided deafness: parents’ perspectives

ABSTRACT Historically, cochlear implantation is reserved for those with bilateral severe to profound hearing loss. However, indications have expanded to include Single-Sided Deafness (SSD) because of the known benefits of binaural hearing and the limitations of unilateral hearing, especially for children developing linguistic and cognitive skills. This study aimed to provide a qualitative perspective of lived experiences of children with SSD who use a cochlear implant (CI), as perceived and reported by their parents. An online questionnaire was developed and distributed to evaluate outcomes of cochlear implantation in children with SSD residing in New Zealand and the United States. Qualitative content analysis of open-ended questions identified themes, including: (1) motivating factors; (2) benefits of amplification; (3) challenges associated with the CI journey; and (4) advice to parents. Parents described benefits and challenges as a result of cochlear implantation, such as access to sound and academic and psychosocial development, as well as subjective improvements in spatial hearing, reduced listening fatigue, enhanced academic performance, and changes in quality of life. The difference that bilateral hearing makes to a child’s development is difficult to precisely define but parental insights offer valuable perspective to healthcare providers when considering what some consider an elective procedure.

Pathways for Strengthening Lived Experience Leadership for Transformative Systems Change: Reflections on Research and Collective Change Strategies.

The Activating Lived Experience Leadership (ALEL) project was a South Australian participatory action research project that aimed to improve the ways lived experience is recognised, valued and integrated across mental health and social sector systems. ALEL was completed during 2019-2021, where it engaged 182 participants in generating community action and research knowledge. Our paper discusses the project's processes of building a collective partnership among lived experience leaders and other leaders from within the sector, so that the actions and strategies identified through research could be implemented by systems-level impact. We describe the collaborative process and key learnings that resulted in eight key action areas for transformative systems change in South Australia. The project invited a diverse range of self-identified lived experience and other leaders to be involved in a PAR process featuring formal qualitative research (focus groups, surveys and interviews) as well as community development activities (leaders' summit meetings, consultations, training and community of practice meetings). These processes were used to help us describe the purpose, achievements and potential of lived experience leadership. Project priorities and systems-level analysis was also undertaken with lived experience sector leaders and project advisors across two leaders' summit meetings, integrating research outcomes with sector planning to define high-level actions and a vision for transformational change. Participatory action research as informed by systems change and collective impact strategies assisted the project to generate detailed findings about the experiences and complexities of lived experience leadership, and collective responses of how systems could better support, be accountable to and leverage lived experience perspectives, experience and peer-work approaches. Systems change to define, value and embed lived experience leadership benefits from collective efforts in both formal research and sector development activities. These can be used to generate foundational understandings and guidance for working together in genuine ways for transforming mental health and social sector systems, experience and outcomes. Members of lived experience communities codesigned the project, and contributed to project governance and the development of all findings and project reports.

A Lived Experience Perspective in Suicide Prevention Research.

A Lived Experience Perspective in Suicide Prevention Research.

Lived Experience Perspective on Internalised Stigma and the EUPD Diagnosis.

EUPD (a personality disorder, characterised by emotion dysregulation, impulsivity and unstable relationships) is a controversial diagnosis affecting around 1 in 100 people, often times for a large part of their life, causing immense suffering to the individual and their families and friends. As someone diagnosed with EUPD, I offer a lived experience perspective on internalised stigma building on growing attention to the impact of prejudice and discrimination faced when navigating the healthcare system with this diagnosis. Include a recommendation to go 'back to basics' and focus on us (especially when accessing crisis care) feeling heard, seen, validated, empowered and understood.

Food accessibility: A lived experience perspective of college students living away from parents’ home

This article aims to examine food accessibility for college students who moved away from their parents’ home, focusing on both objective and perceived perspectives. It considers all the food options surrounding them in the city where they lived for their studies. Using a qualitative methodology based on interviews with 24 students living away from their parents’ home, local stakeholders, heads of university organizations, and field observations, this research shows a gap between objective accessibility (OA) and perceived accessibility (PA) of the supply of food shops, whereas a greater convergence is observed for offers of meals taken away from home. The results show that food options that are available close to where college students live (study, home, commute) are not often included in their set of consideration. Furthermore, they experience conflicts between the three dimensions of PA (price, distance, and cognitive). College students react to these conflicts with different coping strategies depending on their level of food and urban literacy. To improve food accessibility, it is necessary to adopt an integrated approach according to the types of literacy.

Understanding Lived Experience Organizations: A Systematic Scoping Review of Organizational Elements and Characteristics.

Mental health lived experience organizations (LEOs) and their lived experience workforce are increasingly recognized as invaluable. However, a deeper understanding of the elements that enhance or inhibit LEOs' efficacy is required to learn how to sustain LEOs and support their workforce. Rapid international expansion has resulted in significant LEO growth and change, challenging many LEOs to adapt. With this rapid expansion, the field is evolving faster than many LEOs can keep pace with. This review, codesigned and coproduced in partnership with a LEO to draw on both lived experience and academic perspectives, aims for a deeper understanding of which elements within a LEO enhance or inhibit its efficacy, growth, and support for its lived experience workforce. A systematic search of peer-reviewed and non-peer-reviewed literature, following the PRISMA-ScR guidelines and JBI methodology, identified 60 records published in English between 2000 and 2022. The results indicate general agreement regarding which LEO elements are important (e.g., culture, leadership, board composition, organizational structure, financial arrangements, and professionalization). However, considerable disagreements exist regarding the relative influence of several of these elements, especially funding arrangements, in which funder and LEO values often diverge; training for increased lived experience professionalization; and partnerships with medical model-focused mental health services. Organizational disagreements relate to managing future LEO growth and advancing the lived experience workforce while preserving LEOs' unique characteristics that make them valued mental health services. Further research should examine community differences among LEOs, including hybrid LEOs within services and non-LEO mental health organizations.

The feasibility and acceptability of an inoculative intervention video for gambling advertising: a focus group study of academics and experts-by-experience.

Gambling advertising employs a range of persuasive strategies. We therefore aimed to evaluate a counter-advertising intervention video to increase resilience to gambling advertising persuasion. Three in-depth focus groups were conducted, and each group contained a mixture of gambling-related academics (N=12) and experts with lived experience of gambling-related harm (N=10). Participants were given access to the intervention video and provided feedback during the focus groups. Qualitative data were audio recorded and thematically analysed by the research team. Three main themes were identified. First, participants recommended a shorter video that had a simplified and digestible structure. Second, frequent real-world examples of gambling advertisements within the video were discouraged, and the inclusion of a relatable human voiceover was considered imperative to the receptiveness of the video. Finally, participants deemed it important to deliver psychologically grounded yet jargon-free content via a conversational style. An overall narrative framed by consumer-protection was also preferred in order to increase acceptance of the video content, rather than a more didactic framing. Evaluating the acceptability of a counter advertising intervention video provided valuable insight from both an academic and lived-experience perspective. Such insight is instrumental to the meaningful co-design of counter-advertising interventions.

“I don't know how, if, it's ever going to end”: narratives of caring for someone with an enduring eating disorder

BackgroundFamilies and carers are pivotal in supporting loved ones experiencing eating disorders. This role can bring immense distress and burden, yet the experience of caring for someone with an enduring eating disorder has had minimal research focus. Thus, the purpose of this study is to give voice to carers empowering their stories to increase awareness and understanding, which could inform support to carers and consequently people with a lived and/or living experience of eating disorders.MethodsSemi-structured interviews were conducted with 9 carers supporting individuals who had been experiencing an eating disorder for 7 or more years. Data were collected and analysed using narrative inquiry approach.ResultsCarers’ narratives revealed feelings of guilt and personal failure; a profound sense of disillusion with current treatment approaches; and immense grief and anguish. As they negotiated a tenuous relationship with hope and the uncertainty of their loved one’s future, carers spoke to a complex myriad of feelings of acceptance, letting go, and forging on.ConclusionCarers deserve to have their voices heard where they are too often silenced. Their narratives provide an urgent call for transformation in our treatments for eating disorders and further involvement of carers within the treatment journey, and their lived experience perspectives have great potential to guide this endeavour.Level of EvidenceLevel V, qualitative interviews.

'The Norm Is to Not Openly Collaborate': Using the Lens of Co-Production to Evaluate the Development of a COVID-19 ICU Triage Policy.

In 2020, surging cases of COVID-19 meant that health services had to plan for crisis-level triage. In the Australian Capital Territory, the Clinical Health Emergency Coordination Centre sought to develop a triage policy in collaboration with a range of consumer, carer and community groups. This study aims to map the collaborative development of the COVID-19 ICU triage policy onto the principles of co-production. Interviews were conducted with facilitators, members of advocacy or consumer groups and clinicians who were involved in the development of the triage policy. Interviews were thematically analysed using both theory- and data-driven approaches to, respectively, draw on the theoretical framework of co-production, and to explore participants' perspectives relevant to but beyond the scope of this theoretical framework. The findings suggest that at each stage of the initiative, there were ways in which the principles of co-production were met, and ways in which they were not met. One of the fundamental concerns that arose was about whether trying to solve a problem based on resources was compatible with a solution based on human rights. Literature about co-production has been critiqued for being limited to aspirational concerns, or implying co-production is easily achievable. The current study contributes to existing research through the application of the theoretical framework of co-production and exploring ways its aims were met and not met within a system-level collaboration developing a high-stakes health policy. This study has been conducted and written by researchers working from lived experience perspectives, and other researchers working from traditionally mainstream health disciplines, including psychology and medicine. Further, the study is about patient and public involvement in the development of a health policy. Thus it both embodies and is about non-tokenistic collaboration between people with lived experience and other health professionals.

“It’s like building a new person”: lived experience perspectives on eating disorder recovery processes

BackgroundDeeply engaging with the expertise of those who have experienced or supported someone with an eating disorder can add to a growing body of knowledge about recovery processes. In this qualitative study, we sought to explore and generate nuanced understandings of recovery experiences of people with a lived ED experience (first hand or as a caregiver) who were working as mentors in the field. To do this, we focused on changes that occur in personality, traits, and interests over the course of an eating disorder and into recovery.MethodWe conducted semi-structured interviews with 27 people with an eating disorder history, either through personal lived experience (n = 14) or as a caregiver of a loved one with an eating disorder (n = 13). We undertook a reflexive thematic analysis of the data through a critical realist lens.ResultsWe developed three themes, which illustrate the nonlinearity, relationality, and systemically linked nature of changes across experiences of having and recovering from an eating disorder. The first theme focuses on expansion; participants described how their worlds got bigger as they explored who they were becoming and discovered new ways of living in line with their values. The second theme emphasizes the balance between support and autonomy participants described as important for enabling change to occur across the recovery process. The last theme highlights the ways in which changes throughout the recovery process entwined with systemic factors, including actively pushing back against diet culture and weight stigma.ConclusionsParticipants’ stories highlight interactions between individual, relational, and societal shifts that occur throughout the course of an ED and into recovery. They support ongoing calls to orient to ED recovery as situated within a broader social milieu, which invites us to build supportive environments to enable expansion and flourishing.

‘I was having an anxiety attack and they pepper sprayed me': police apprehension in mental health contexts in Australia

ABSTRACT Police attendance in mental health contexts is often traumatic for the person in crisis, their family and first responders. Existing literature on police involvement in mental health responses tends to focus on police perspectives. Scholarship exploring lived experience perspectives is limited, yet is crucial for informing programmes, policies and reforms. We present findings from one of the first projects co-produced with people with lived experiences of being apprehended by police under mental health legislation. Interviews were conducted with twenty participants who had experience(s) of police apprehension across Australia. Findings highlight the social disadvantage experienced by participants prior to being apprehended and that use of force (such as tasering, pepper spraying and restraining in locked police vans) was common and over-used. Our study identified that police apprehension has lasting and wide-ranging impacts, leading to loss of employment, trauma, property damage, negative self-perceptions, discrimination, and fear of future police responses. Some participants were also apprehended by police while experiencing family violence and were misidentified as perpetrators. We argue police use of force mirrors the use of force within mental health services, with participants not experiencing a clear separation between police and mental health responses. The article shares participants’ ideas for change, including response models based on human rights, police non-attendance and peer-led initiatives. Our findings suggest the need for investment in alternatives to police responses and further research involving lived experience perspectives to inform out understanding of mental health crisis responses.

The complex lived experience of schizophrenia diagnosis: a thematic analysis of online forum posts

Receiving a diagnosis of schizophrenia can be a life-changing experience with both negative and positive consequences. Previous research has identified important aspects of diagnosis, such as disagreement with the label, diagnostic shifts, stigma, and communication of the diagnosis. There is, however, relatively little research from the lived experience perspective. In this study, we investigated the lived experiences of receiving a schizophrenia diagnosis utilising a popular Reddit discussion forum. We used inductive thematic analysis to consider posts from 105 unique usernames and identified five themes. These were (i) Denial and acceptance; (ii) Stigma of diagnosis and selective disclosure; (iii) The complicated process of diagnosis; (iv) Losing, maintaining, and finding a sense of self; and (v) Receiving, finding, and providing support. Diagnosis is a complex personal experience where the same person can simultaneously accept and reject the diagnostic label. Greater attention is required to the lived experience of this diagnostic journey.

Participatory design of bodysymptoms.org: An interactive web resource to explain multisystem functional somatic symptoms

ObjectiveThere is a lack of trustworthy information about Functional Somatic Symptoms (FSS) on the internet. This means integrative bio-psycho-social explanations of FSS and related health advice are not readily available to the public. To explore and address this problem, we carried out the bodysymptoms project, with the aim to build a website which presents current widely accepted explanations for FSS and shows how different explanations are inter-connected. MethodsBodysymptoms was set up as a research-in-action project with a diverse range of international stakeholder-participants, combining approaches from patient and public involvement in healthcare with participatory design. 7 participants with lived experience of multi-system functional symptoms took part in the project and measures of meaningful engagement throughout the project were rated highly. This manuscript describes the methodology by which the website was developed. ResultsThrough iterative cycles we determined the requirements for an interactive explanatory model and co-created a novel online health interactive resource with integrated actionable health advice. The target end user are young adults with persistent physical symptoms, maintained by functional mechanisms. The overall aim is to empower people at risk of developing functional disorders to seek better health outcomes. The website is intended to be used prior to or alongside engagement with healthcare. ConclusionBringing lived experience and multi-disciplinary perspectives into dialogue through participatory design can harness the power of research to create immediate shared value. This project has resulted in a usable open access website, bodysymptoms.org, which provides education about FSS for patients, healthcare professionals and members of the public looking to understand FSS.

Digital Mental Health for Schizophrenia and Other Severe Mental Illnesses: An International Consensus on Current Challenges and Potential Solutions.

Digital approaches may be helpful in augmenting care to address unmet mental health needs, particularly for schizophrenia and severe mental illness (SMI). An international multidisciplinary group was convened to reach a consensus on the challenges and potential solutions regarding collecting data, delivering treatment, and the ethical challenges in digital mental health approaches for schizophrenia and SMI. The consensus development panel method was used, with an in-person meeting of 2 groups: the expert group and the panel. Membership was multidisciplinary including those with lived experience, with equal participation at all stages and coproduction of the consensus outputs and summary. Relevant literature was shared in advance of the meeting, and a systematic search of the recent literature on digital mental health interventions for schizophrenia and psychosis was completed to ensure that the panel was informed before the meeting with the expert group. Four broad areas of challenge and proposed solutions were identified: (1) user involvement for real coproduction; (2) new approaches to methodology in digital mental health, including agreed standards, data sharing, measuring harms, prevention strategies, and mechanistic research; (3) regulation and funding issues; and (4) implementation in real-world settings (including multidisciplinary collaboration, training, augmenting existing service provision, and social and population-focused approaches). Examples are provided with more detail on human-centered research design, lived experience perspectives, and biomedical ethics in digital mental health approaches for SMI. The group agreed by consensus on a number of recommendations: (1) a new and improved approach to digital mental health research (with agreed reporting standards, data sharing, and shared protocols), (2) equal emphasis on social and population research as well as biological and psychological approaches, (3) meaningful collaborations across varied disciplines that have previously not worked closely together, (4) increased focus on the business model and product with planning and new funding structures across the whole development pathway, (5) increased focus and reporting on ethical issues and potential harms, and (6) organizational changes to allow for true communication and coproduction with those with lived experience of SMI. This study approach, combining an international expert meeting with patient and public involvement and engagement throughout the process, consensus methodology, discussion, and publication, is a helpful way to identify directions for future research and clinical implementation in rapidly evolving areas and can be combined with measurements of real-world clinical impact over time. Similar initiatives will be helpful in other areas of digital mental health and similarly fast-evolving fields to focus research and organizational change and effect improved real-world clinical implementation.

Visual and Textual Interfaces in Design Research

Art and design creative techniques are increasingly used in educational and social sciences research as means to complement narrative qualitative research methodologies. Less known is the means by which interior design and visual arts students may use collage, concept maps or other artful visual tools when analysing the narrative in research. This paper demonstrates how artful methods can be combined with more traditional qualitative methodologies to uncover meaning in research texts or during the data analysis process. The authors show how both the phenomenon used and the method applied to data analysis offers a creative way to allow for meaning to emerge, while situating the research firmly in a phenomenological perspective of lived experience of the researcher through a collaborative conversation. Two visual examples are presented to demonstrate the phenomenon, and the discussion situates the usefulness of this type of research inquiry method.

Educational trajectories for residential care experienced young people are complex. A lived experience perspective from a PhD study in Scotland

PurposeResearch highlights that residential care experienced children and young people in Scotland have poorer educational outcomes than their peers within the wider population. Despite this, poor educational attainment is not inevitable, and further research is needed to increase the understanding of long-term trajectories. This paper aims to address a gap in contemporary literature that is of benefit to practitioners, academics and policymakers. Despite experiencing adversity, attachment, separation and loss, school attainment data on leaving care only reflects part of the educational journey.Design/methodology/approachUsing a mixed methodology and social constructionist theoretical framework, a practitioner-led PhD study gathered data from questionnaires and qualitative information from 13 semi-structured interviews with young people who had experienced residential care in Scotland. Recruitment was through a gatekeeper within a national third-sector organisation. The educational trajectories for young people with experience of residential care in Scotland are complex. A lived experience perspective from a PhD study illustrates that statistical data only captures part of the journey and the author needs to reconsider how success is measured.FindingsOf the 13 participants in the study, 12 achieved success educationally, although for the majority of those interviewed, attainment continued after leaving compulsory education. Barriers to greater success included placement uncertainty and movement, stigma, low expectations, pressure to not become a statistic, procedural obstacles and inconsistency or poor relationships.Research limitations/implicationsSupportive relationships and stable placements can create circumstances conducive to effective learning, but evidence reflects that support is necessary throughout the life course if children, young people and adults with care experience are to reach their full academic potential.Originality/valueResearch into the educational outcomes for those with experience of residential care in Scotland is limited. This paper, from a PhD, provides lived experience accounts from a practitioner-led study.