Lived Experience Perspectives Research Articles

Epistemic injustice and mental health research: A pragmatic approach to working with lived experience expertise.

"Epistemic injustice" refers to how people from marginalized groups are denied opportunities to create knowledge and derive meaning from their experiences. In the mental health field, epistemic injustice occurs in both research and service delivery systems and particularly impacts people from racialized communities. Lived experience involvement and leadership are often proposed as methods of combatting epistemic injustice, a tool for ensuring the views of people at the center of an issue are heard and can inform decision-making. However, this approach is not without challenges. In this paper, we draw on our work as intermediary organizations that center lived experience perspectives to challenge epistemic injustice. We highlight two problems we have identified in working in the mental health research field: "elite capture" and "epistemic exploitation". We believe that these problems are barriers to the radical and structural change required for epistemic justice to occur. We propose a pragmatic approach to addressing these issues. Based on our work we suggest three considerations for researchers and our own organizations to consider when involving people with lived experience. These include reflecting on the purpose of creating knowledge, with a focus on impact. Embedding lived experience roles, with appropriate employment, support and remuneration, and acknowledging that it may be necessary to work alongside existing systems as a "critical friend" while developing new spaces and structures for alternative forms of knowledge. Finally, the mental health research system needs to change. We believe these three considerations will help us better move toward epistemic justice in mental health research.

Co-producing rapid research: Strengths and challenges from a lived experience perspective.

The Lived Experience Researchers (LERs) of the Mental Health Policy Research Unit (MHPRU) reflect on the experience of conducting rapid co-produced research, particularly during the first year of the COVID-19 pandemic. Throughout this perspective article, we introduce requirements for co-production applying the 4Pi Framework, reflect on specific characteristics of co-production in rapid research, discuss strengths and challenges for involvement of LERs in rapid research, and lastly provide recommendations to achieve meaningful involvement. Incorporating meaningful co-production is an augmentation to any research project, with several benefits to the research, to the team, and to individual researchers. Particularly in the case of rapid research, that aims for efficient translation of knowledge into practice, involvement of experts by experience will be key. The work conducted by the MHPRU LERs presented in this paper demonstrates the viability, value, and potential of this way of working.

“The Witch’s Mirror”: A Review of Scholarship on Witchcraft and a Reassessment Based on the Intersectional Lived Experiences of Dalits and Adivasis

This article explores intersectionality of identities within Dalit and Adivasi traditions through a review of contemporary research on practices of witchcraft. Witchcraft practices occur all over the Indian subcontinent and form focal points of intersectionality beyond fixed structures and stereotypes. By approaching witchcraft through the perspective of the lived experience of the ones involved, we gain better understanding of the individuals involved, of the larger socio-economic context and of the practice itself without falling into the trap of recasting stereotypes. By approaching witchcraft from the perspective of lived experience, it becomes clear that the occurrence of witchcraft is the outcome of complex intersectional power structures, such as gender, caste, class and religion/spirituality. However, the approach accomplishes even more by addressing diversity, ambiguity and dynamics within intersectional (power) structures. The knowledge drawn from the approach of lived experience of Dalits and Adivasis leads to new academic discourses such as ‘Dalit and Adivasi Studies’, ‘Critical Caste Theory’, ‘Dalit Feminism’ and the ‘Dalit Queer Movement’. These discourses provide new counter-hegemonic knowledge, adding to and challenging academia.

The fundamental need for lived experience perspectives in developing and evaluating psychotherapies.

This article discusses the fundamental need for lived experience perspectives in developing and evaluating psychotherapies. The primary professional goal of clinical psychology is to serve individuals and communities living with or at risk of mental illness. To date, the field has fallen persistently short of this goal, despite decades of research on evidence-based treatments and myriad innovations in psychotherapy research. Brief and low-intensity programs, transdiagnostic approaches, and digital mental health tools have all challenged long-held assumptions of what "psychotherapy" can be, pointing toward novel pathways to effective care. And yet, population-level rates of mental illness are high and rising, access to care remains abysmally low, early treatment dropout among people who do access care is common, and science-backed treatments rarely make it into everyday practice. The author argues that the impact of psychotherapy innovations has been constrained by a fundamental flaw in clinical psychology's intervention development and evaluation pipeline. . From the start, intervention science has deprioritized the views and voices of those our treatments aim to support-from here, "experts by experience" (EBEs)-in the design, assessment, and dissemination of novel treatments. EBE-partnered research can strengthen engagement, inform best-practices, and personalize assessments of meaningful clinical change. Further, in fields adjacent to clinical psychology, EBE engagement in research is common. These facts render the virtual absence of EBE partnership from mainstream psychotherapy research especially striking. Without centering EBE views, intervention scientists cannot optimize supports for the diverse communities they aim to serve. Instead, they risk building programs that people with mental health needs may never access, benefit from, or want. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

“I can’t remember the last time I was comfortable about being home”: lived experience perspectives on thriving following homelessness

ABSTRACT Purpose Strategies for preventing and ending homelessness are frequently measured by their effectiveness on indices of tenancy sustainment. To shift this narrative, we conducted research to identify what is needed to “thrive” following homelessness from the perspectives of persons with lived experience in Ontario, Canada. Methods Conducted in the context of a community-based participatory research study aimed at informing the development of intervention strategies, we interviewed 46 persons living with mental illness and/or substance use disorder [n = 25 (54.3%) unhoused; n = 21 (45.7%) housed following homelessness] using qualitative interviews. A subsample of 14 participants agreed to engage in photovoice interviews. We analysed these data abductively using thematic analysis informed by health equity and social justice. Results Participants described experiences of “living in a state of lack” following homelessness. This essence was expressed through four themes: 1) housing as part one of the journey to home; 2) finding and keeping “my people”; 3) meaningful activity as critical for thriving following homelessness; and 4) struggling to access mental health supports in the context of challenging circumstances. Conclusions Individuals struggle to thrive following homelessness in the context of insufficient resources. There is a need to build on existing interventions to address outcomes beyond tenancy sustainment.

Exploring the Use of Photovoice in Understanding the Lived Experience of Neurological Conditions: A Scoping Review and Reflexive Thematic Analysis

People living with neurological conditions such as multiple sclerosis, Parkinson’s disease and dementia may experience physical impairment, social disengagement, cognitive issues, and emotional disturbances. While qualitative research utilising in-depth interviews can access lived experience perspectives, the use of photovoice has the potential to obtain rich insights that include images and raise community awareness. The purpose of this scoping review was to document salient themes relating to the lived experience of neurological conditions as reported in photovoice studies. Following established scoping review methods of the Joanna Briggs Institute, a comprehensive search of five electronic databases, including MEDLINE, EMBASE, PSYCHINFO, CINAHL, and SCOPUS was conducted, as well as relevant journals and reference lists of retrieved studies. References were sorted, screened, and evaluated for inclusion using Endnote and Rayyan. The search results and the study inclusion process were reported in full in the final scoping review and presented in a PRISMA-ScR flow diagram. Reflexive thematic analysis was managed through NVivo to identify and synthesise findings, as well as identify themes. Following the removal of duplicates, the search identified 109 articles for title and abstract screening. The final dataset consisted of 25 studies published between 2007 and 2021. Two themes were identified: 1) ‘Losses and benefit finding’ focuses on the lived experience of people with neurological conditions including being pushed aside by society, a progressive decline of self and growing as a result of losses; 2) ‘Challenges of using photovoice in neurological research’ covers the confusion of terminology and implementation complexities and adaption. Societal change is needed for greater inclusion of people living with neurological conditions. Future studies using photovoice need to pay attention to methodological issues and include the recommended final step of the photovoice process to hold gallery exhibits to disseminate findings to raise awareness and initiate social change.

Lived experience research in learning disabilities: The understanding inequalities project from a service user's perspective

AbstractBackgroundPeople with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co‐production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co‐production) leads to more comprehensive knowledge and understanding of learning disabilities.MethodsCo‐production events were held with people with learning disabilities, facilitated by the co‐author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems.FindingsA series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations.ConclusionsLived experience research and co‐production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference.

Stories for Change:The impact of Public Narrative on the co-production process.

Involving service users in health service design and delivery is considered important to improve the quality of healthcare because it ensures that the delivery of healthcare is adapted to the needs of the users. Co-production is a process used to involve service users, but multiple papers have highlighted the need for the mechanisms and values guiding co-production to be more clearly stated. The aim of this paper was to evaluate the mechanisms and values that guided the co-production approach of the Stories for Change project, which used Public Narrative as part of the co-design process to create change in National Health Service maternity services. This study was conducted using a rapid feedback evaluation approach. Semistructured interviews (n = 16) were the main source of data, six of which were maternity service users, with observations (5 h) and documentary analysis also carried out in parallel. RREAL sheets were used for data analysis to organize data based on key topics of interest. This study identified three broad mechanisms and values underpinning the co-production approach: creating an open and safe space to share ideas, learning how to tell stories using Public Narrativeand having service providers who play a key role in strengthening the health system listen to stories compelling them to action. This study identified the main areas for improvement of the Stories for Change project related to recruitment, the inclusion of participants, the co-design process, the Skills Sessionand the Learning Event. Our study provided a deeper understanding of the co-production approach that addresses the need to uncover the mechanism and values underlying co-production and co-design approaches. This study expands on the literature pertaining to the influence of storytelling in creating meaningful change in health care. We propose a co-design methodology that uses Public Narrative as a model for service user engagement to help inform future healthcare development processes. The experiences and perceptions of maternity service users and health professionals informed this evaluation. The project organizers were involved in the manuscript preparation stage by providing feedback, and service users wrote a commentary on the project from the lived experience perspective.

Experiential peers cultivate a participation culture in youth justice

PurposeThe purpose of this viewpoint paper is to explore the concept of experiential peer support, which involves individuals who have lived experiences of using care and justice services. This paper discusses whether experiential peer support can contribute to developing a participatory culture in youth justice practice.Design/methodology/approachThis viewpoint paper will critically evaluate the relational power of experiential peers. Particular attention will be paid to the key components of relational practices by reflecting on ways to enhance the voice of the child within participatory and child first approaches. The paper draws on a range of evidence and research to explore whether inclusion of a lived experience perspective can foster participatory cultures.FindingsExperiential peers can create a participatory youth justice culture, which can positively impact on desistance for justice involved children.Research limitations/implicationsFurther research needs to be undertaken to extrapolate the key characteristics of effective experiential peer support. This includes discussion on whether recruitment of wounded healers into professional youth justice roles can enhance participation in youth justice settings and construct conditions for social growth to develop in youth justice practice.Originality/valueThe author of this viewpoint paper has personal experience of care, youth incarceration and professional experience of youth justice participation practice, providing a unique vantage point and contribution to the desistance and rehabilitation literature.

Loving a broken soul: The lived experience perspective on the implications of Veterans’ moral injuries for families

LAY SUMMARY Research on and investigation of potential implications of moral injury (MI) for Veteran family members remains uncharted territory while its harsh realities play out in their homes. Family members can feel a sense of distance and divide from the Veteran and, as a result, are left on the periphery trying to understand. Many internalize this distance as a reflection of their own worth or the quality of their relationship with the Veteran. Secondary exposure to events through the Veteran can also lead family members to question their own beliefs about the world, humanity, institutions, their loved one, or themselves. One also cannot help but wonder, what do the farther-reaching tentacles of MI grip? What are the potential implications for children’s development and their own moral schemas? Could family support and understanding play a vital role in the Veteran’s recovery from MI? This article discusses potential implications for family members of Veteran MI from the lived experience perspective of the spouse of a Veteran with posttraumatic stress disorder and MI who has a professional background in the fields of Veteran and family mental health and family peer support.

Adapting cognitive behaviour therapy for adults with autism: a lived experience-led consultation with specialist psychological therapists

Abstract The aim of this study was to investigate, from a lived experience perspective, specialist psychological therapists’ views on therapeutic adaptations to cognitive behaviour therapy (CBT) for autism that are most helpful for service users and enable best practice. Psychological therapist participants took part in semi-structured interviews led by a researcher with lived experience of autism. A thematic analysis was carried out. Participants (n=8) reported that challenges for service users were anxiety about the therapeutic relationship; communication difficulties with understanding and being understood; emotion recognition difficulties impeding trust and development of the therapeutic relationship; relationships with family interfering with the intervention; information processing impairments, necessitating a slower pace to the intervention; and avoidance of therapy due to anxiety. Goals were forming relationships and building social confidence and skills. Demographic differences were age, with older service users deemed less open to change and younger service users less mature and more often accompanied by family; and gender, with female service users deemed more socially able than males. Therapeutic adaptations were to increase collaboration; support emotional literacy, to help service users understand their own and others’ emotions; focus on special interests; use visual prompts, to improve communication and understanding; be consistent, to build trust and reduce anxiety; accommodate sensory needs, to reduce anxiety and build engagement; avoid metaphors, to reduce communication difficulties; and use role-play, to build and enhance social skills. Therefore, adapting CBT may support clinicians and reduce challenges for people with autism, while lived experience perspectives ensure adaptations meet service users’ needs. Key learning aims (1) To use a lived experience perspective to explore expert psychological therapists’ views of challenges and adaptations when delivering CBT for adults with autism. (2) To investigate the benefits of adapting CBT when working with adults with autism. (3) To understand the importance of involving people with lived experience in the development and co-production of psychological interventions.

Process and Outcome of Community Engagement Event on Substance Use and Addiction Risks Facing Their Immigrant Communities in Regina, Saskatchewan.

Canada is a significant destination for immigrants who are drawn from different ethnic and cultural backgrounds some of whom have a hidden risk for substance use disorders due to acculturation stress and are not screened for risks of substance use or addiction when considering medical admissibility. Not surprisingly, healthcare providers in Regina are reporting a noticeable increase in substance use among immigrants. These immigrants experience barriers in seeking substance use prevention and treatment services due to diverse challenges: stigma, shame, and lack of knowledge of existing services. Considering the discussed challenges and risks of substance use disorders in immigrant communities, creating a safe space for discussing these topics is urgent. To understand and address these challenges, a connection grant from the Saskatchewan Health Research Foundation (SHRF) to mobilize immigrant communities in Regina to explore substance use issues and their impact on the community was sought and received. Subsequently, a Zoom knowledge-sharing event brought settlement agency stakeholders together to deliberate issues on substance use and addiction faced by immigrants in Regina, Saskatchewan. The Zoom session included presentations on immigrants and substance use from the clinical, community, and lived experience perspectives of immigrants. Because of the challenges and risks, this community consultation process revealed that acculturation stress and the ease of obtaining socially acceptable substances fuel substance use and addiction among immigrants in Regina; this is further exacerbated by the lack of programming available to prevent and reduce the risks of substance use in this population. A team of knowledge keepers with lived experiences, service providers, and researchers was assembled to explore substance use and addiction among immigrants. This manuscript reports the process of community engagement to identify solutions to this budding issue. The strengths, challenges, and lessons learned are identified.

Lived Experience Perspectives on Ableism Within and Beyond Music Therapists’ Professional Identities

Abstract The 10 authors contributing to this reflective essay are comprised of music therapy practitioners, academics, and students with lived experience of disability, neurodivergence, or/and chronic physical and mental health conditions. We will discuss the impact of ableism in our music therapy work, both for participants and for music therapists. Beyond outright discrimination of people with disability, ableism is typically linked to an agenda to normalize and cure. In contrast, music therapists working from a position of post-ableist music therapy seek to collaboratively provide conditions and musical experiences that are less disabling and restrictive through addressing barriers and facilitating connections. We will discuss how including post-ableist perspectives might also create safer spaces for music therapists with lived experience of disability, neurodivergence, and/or chronic physical and mental health conditions. In this critical commentary, we wish to move from a deficit understanding of therapists with lived experience that is often implicit in codes of ethics and standards of practice, to one that celebrates the richness and knowledge that our experience brings. To embed post-ableist perspectives into our profession at all levels, we will discuss the implications for student training and supervision when accessibility is centered in practicum and classroom learning activities. In conclusion, we aim to make apparent the fact that therapists can and do come in all forms and with all backgrounds and that recognizing health diversity in our profession benefits us all.

A lived experience perspective on the classification of atypical anorexia nervosa.

A lived experience perspective on the classification of atypical anorexia nervosa.

PERSPECTIVES ON HEALTH AND AGING WITH SPINAL CORD INJURY: A QUALITATIVE DESCRIPTIVE STUDY

Abstract Age of spinal cord injury (SCI) onset and life expectancy have increased over the last half century, but minimal inquiry on health and aging lived experience perspectives are available. The objective of this study was to begin to examine this through a qualitative descriptive design. Nine group interviews were conducted with individuals living with SCI (n=24) 22-76 with injury duration 3-47 years. Participant descriptions on health and aging were thematically analyzed. Health maintenance was related to physical routine to prevent secondary health conditions, injury acceptance, and engagement with disability networks. Aging outlook was connected to fear of dependence and lack of education on aging with SCI. These findings demonstrate that clinicians and researchers should investigate issues beyond routine self-management to support life with SCI. Personal considerations based on life stage when injured warrants investigation. Advocacy for peer-support is imperative at all life stages given its positive impact on health.

Harnessing People's Lived Experience to Strengthen Health Systems and Support Equitable Musculoskeletal Health Care.

BACKGROUND: Despite the rising burden of musculoskeletal (MSK) problems (MSK conditions, MSK pain, and MSK injury and trauma) in most countries, actions to improve (strengthen) systems for supporting MSK health are often low on the priority list, relative to other noncommunicable diseases. Delivering effective, person-centered and equitable MSK health care requires strengthening systems for health, for example, through policy, financing, service delivery, and workforce initiatives. A critical, but often overlooked component is genuine integration of lived experience perspectives to cocreate care and systems that are responsive to people's needs and contexts. CLINICAL QUESTION: How can cocreation approaches support effective, person-centered and equitable MSK health care? What principles can stakeholders adopt to build responsive health systems? KEY RESULTS: Lived experience perspectives are not systematically integrated in initiatives to strengthen health systems. However, such integration is critical to creating equitable and person-centered health systems that provide care and support healthy populations. Cocreation principles and frameworks can guide processes to strengthen health systems, which must include historically marginalized groups and consider social and environmental contexts as they relate to health. CLINICAL APPLICATION: Clinicians, educators, and policy-makers play a critical role in creating equitable health systems and environments, and driving system reform with people who have lived experience. Genuine cocreation approaches capture diverse economic development (in particular, low-resource settings where health inequities are more prevalent), span the life course and diagnostic categories, are appropriate and/or adapted for the context and setting, and reflect evolving standards and opportunities for MSK health. J Orthop Sports Phys Ther 2023;53(4):1-10. Epub: 12 December 2022. doi:10.2519/jospt.2022.11427.

Addressing me in the context of my disease: Why it is so complicated

Addressing a person in the context of their disease must be done respectfully. As a person with multiple sclerosis (MS), my preference is to be referred to as such. Some people with MS refer to themselves as MSers, MS warriors, MS sufferers, and that’s fine. A person with MS can refer to themselves in the context of their disease in the manner they choose. People without MS should use terminology most respectful and acceptable to the broadest of the minority. Academics sometimes use persons with MS to refer to an infinite number of people. Not only is this incorrect but use of persons has broadly fallen out of favour in recent decades. In this personal viewpoint I discuss these issues from a lived experience perspective.

Informing mHealth and Web-Based Eating Disorder Interventions: Combining Lived Experience Perspectives With Design Thinking Approaches.

App-based interventions designed to prevent and treat eating disorders have considerable potential to overcome known barriers to treatment seeking. Existing apps have shown efficacy in terms of symptom reduction; however, uptake and retention issues are common. To ensure that apps meet the needs and preferences of those for whom they were designed, it is critical to understand the lived experience of potential users and involve them in the process of design, development, and delivery. However, few app-based interventions are pretested on and co-designed with end users before randomized controlled trials. To address the issue, this study used a highly novel design thinking approach to provide the context and a lived experience perspective of the end user, thus allowing for a deeper level of understanding. In total, 7 young women (mean age 25.83, SD 5.34, range 21-33 years) who self-identified as having a history of body image issues or eating disorders were recruited. Participants were interviewed about their lived experience of body image and eating disorders and reported their needs and preferences for app-based eating disorder interventions. Traditional (thematic analysis) and novel (empathy mapping; visually depicting and empathizing with the user's personal experience) analyses were performed, providing a lived experience perspective of eating disorders and identifying the needs and preferences of this population in relation to app-based interventions for eating disorders. Key challenges and opportunities for app-based eating disorder interventions were also identified. Findings highlighted the importance of understanding and identifying problematic eating disorder symptoms for the user, helpful practices for recovery that identify personal values and goals, the role of social support in facilitating hope, and aspects of usability to promote continued engagement and recovery. Practical guidance and recommendations are described for those developing app-based eating disorder interventions. These findings have the potential to inform practices to enhance participant uptake and retention in the context of app-based interventions for this population.

Lived experience perspectives of factors that influence mental health recovery in Singapore: a thematic analysis

Purpose Contemporary interpretations of mental health recovery emphasize the need to understand better the lived experience of people with mental health conditions and how they define the idea of recovery. While traction for such ideas has been building in many western countries, the recovery movement is still in its early stages within most Asian countries. Hence, this study aims to add to this growing effort by understanding various factors that influence the recovery of people with mental health conditions in Singapore. Design/methodology/approach Braun and Clarke’s thematic analysis was used on the qualitative data provided by 21 participants. Findings Four themes were revealed: double-edged nature of social support, challenges accessing mental health support, personalized coping strategies and societal influences. As a result, the authors could better understand various factors that influenced the recovery process of people with mental health conditions in Singapore, such as the high costs and low levels of literacy regarding pathways to mental health services. In addition, the importance of societal influences on mental health recovery was highlighted, and their impact could be seen through the participants’ sharing. Research limitations/implications These findings form a foundation from which future research and recovery-oriented interventions can work from to provide more tailored approaches to supporting people with mental health conditions. Originality/value This study identified cultural nuances to notions of recovery that are commonly found in personal recovery constructs that need to be considered when working within culturally diverse populations.

Lived experience perspectives on a definition of eating disorder recovery in a sample of predominantly white women: a mixed method study

BackgroundThere has recently been a push for recovery-focused research in the eating disorder (ED) field, starting with a consensus definition of recovery. One definition, in particular, proposed by Bardone-Cone et al. [21] has received considerable attention given its transdiagnostic nature and validation studies. However, no studies to date have elicited lived experience views of this definition. The goal of the current study was to examine perspectives on this definition of recovery from individuals with a past or present ED and to determine whether participant agreement with the model differed based on diagnostic history or current symptom severity.MethodsSixty-two individuals (95.2% women; 91.9% White/European) participated in a 1–2 h interview aimed at capturing their perspectives on ED recovery. Transcripts were analyzed using qualitative content analysis and codebook thematic analysis to examine agreement with and thoughts on Bardone-Cone’s definition of recovery, respectively. Chi-squared tests of independence and binary logistic regression were computed to determine whether agreement with the definition differed across diagnostic history and self-reported symptoms.ResultsAlthough some participants indicated acceptance of the definition, the majority expressed concerns related to its categorical nature, proposed criteria, feasibility, language, and applications. There were no differences in acceptance based on diagnostic history or current symptom severity.ConclusionA single definition of recovery does not seem to fit individuals’ lived ED experience. Future research may benefit from distinguishing between recovery as an individually-defined phenomenon and related constructs such as remission (i.e., loss of diagnosis or absence of clinical symptoms). A more comprehensive multi-faceted, and person-centered model of recovery may have merit in clinical settings.