Lived Experience Of Psychosis Research Articles

SUCCEED Africa: protocol for a multi-method pilot study of a community-based intervention for people with psychosis in Sierra Leone, Nigeria, Zimbabwe and Malawi

BackgroundRecent reviews have highlighted the need for participatory research to design and evaluate inclusive, community-based interventions that address the diverse needs of people with lived experience of psychosis, within and beyond the health sector. The SUCCEED Africa consortium aims to co-produce a 6-year programme of research across four countries in West (Sierra Leone, Nigeria) and Southeast Africa (Zimbabwe and Malawi). This protocol describes the pilot study in which SUCCEED’s intervention, research tools and processes will be tested on a small scale in each country in preparation for future evaluation research.MethodsThe SUCCEED intervention comprises peer support, case management and livelihood activities for people with lived experience of psychosis. The pilot uses a before-and-after study design investigating change in subjective quality of life in adults diagnosed with a primary psychotic disorder or another mental disorder with psychotic symptoms who are offered the SUCCEED intervention over a 4-month period. Nested within this study are the following: a baseline assessment of the feasibility, acceptability and face validity of the selected measurement tool and validity of proxy versus self-completion; and a multi-method process evaluation examining key process indicators and implementation, service and client-level outcomes. Methods include the following: baseline cognitive interviews; semi-structed observation and routine monitoring and evaluation of service delivery; endline interviews and focus group discussions; and a comparison of provider competencies at endline. At each of the four pilot sites, participants will include the following: ten people with lived experience of psychosis, recruited from either health services or community settings using purposive sampling to maximise variation; up to ten adult family members (one per participant with lived experience) involved in their care; the peer support worker, community support worker and supervisor responsible for delivering the intervention; and the data collectors. Recruitment will take place in July and August 2023.DiscussionTo the best of our knowledge, this will be the first study of a community-based intervention incorporating lay-delivered case management, formal peer support and livelihoods activities for people with lived experience of psychosis in sub-Saharan Africa. Findings will be relevant not only to SUCCEED but also to others interested in promoting rights-based approaches to community mental health in low-resource settings.Trial registrationUS National Library of Medicine (ClinicalTrials.gov), Protocol reference ID 28346. Initially registered retrospectively July 20/2023: In review.

Developing an Automated Virtual Reality Therapy for Improving Positive Self-Beliefs and Psychological Well-Being (Phoenix VR Self-Confidence Therapy): Tutorial.

Virtual reality (VR) is an immersive technology in which delivery of psychological therapy techniques can be automated. Techniques can be implemented similarly to real-world delivery or in ways that are not possible in the real world to enhance efficacy. The potential is for greater access for patients to effective therapy. Despite an increase in the use of VR for mental health, there are few descriptions of how to build and design automated VR therapies. We describe the development of Phoenix VR Self-Confidence Therapy, designed to increase positive self-beliefs in young patients diagnosed with psychosis in order to improve psychological well-being. A double-diamond, user-centered design process conducted over the course of 18 months was used, involving stakeholders from multiple areas: individuals with lived experience of psychosis, clinical psychologists, treatment designers, and VR software developers. Thirteen meetings were held with young patients diagnosed with psychosis to increase the understanding and improve the assessment of positive self-beliefs, help design the scenarios for implementing therapeutic techniques, and conduct user testing. The resulting Phoenix therapy is a class I United Kingdom Conformity Assessed (UKCA)-certified medical device designed to be used on the standalone Meta Quest 2 (Meta Platforms) headset. Phoenix aims to build up 3 types of positive self-beliefs that are connected to psychological well-being. In a community farm area, tasks are designed to increase a sense of mastery and achievement ("I can make a difference"); in a TV studio, users complete an activity with graded levels of difficulty to promote success in the face of a challenge ("I can do this"); and in a forest by a lake, activities are designed to encourage feelings of pleasure and enjoyment ("I can enjoy things"). Phoenix is delivered over the course of approximately 6 weekly sessions supported by a mental health provider. Patients can take the headsets home to use in between sessions. Usability testing with individuals with lived experience of psychosis, as well as patients in the National Health Service (aged 16-26 years), demonstrated that Phoenix is engaging, easy to use, and has high levels of satisfaction.

Development of mental health first aid guidelines for psychosis for Brazil: A Delphi expert consensus study.

Psychotic symptoms can be highly debilitating for those experiencing them. Community members, including family and friends, can play a crucial role in providing support to a person during the early stages of psychosis, provided they have the necessary resources. Mental health first aid guidelines for psychosis have been developed for high-income countries and this study aimed to adapt those guidelines for Brazil. A Delphi expert consensus method was used to gather the views and opinions of 28 health professionals and 24 individuals with lived experience of psychosis in Brazil over two survey rounds. Firstly, 403 statements were translated from English to Brazilian-Portuguese. In the Round 1 survey, participants were asked to rate each statement based on how important they believed it was for it to be included in the Brazilian guidelines. They were also asked to suggest new actions if they wished. Consensus was reached on 257 statements. Eight new statements were created and endorsed from panelists' comments, and a further 45 statements were unique to the Brazilian guidelines. There was a modest level of similarity between the English-language and Brazilian guidelines. However, the Brazilian guidelines had a greater focus on the importance of family support for people with psychosis and stigma as a possible barrier for openly discussing help-seeking actions for mental health problems in Brazil.

Development of mental health first-aid guidelines for psychosis: a Delphi expert consensus study in Argentina and Chile

BackgroundPsychotic symptoms may be less common than anxiety or affective symptoms, but they are still frequent and typically highly debilitating. Community members can have a role in helping to identify, offer initial help and facilitate access to mental health services of individuals experiencing psychosis. Mental health first aid guidelines for helping a person experiencing psychosis have been developed for the global north. This study aimed to adapt the English- language guidelines for Chile and Argentina.MethodsA Delphi expert consensus study was conducted with two panels of experts, one of people with lived experience of psychosis (either their own or as a carer; n = 29) and another one of health professionals (n = 29). Overall, 249 survey items from the original English guidelines and 26 items suggested by the local team formed a total of 275 that were evaluated in the first round. Participants were invited to rate how essential or important those statements were for Chile and Argentina, and encouraged to suggest new statements if necessary. These were presented in a second round. Items with 80% of endorsement by both panels were included in the guidelines for Chile and Argentina.ResultsData were obtained over two survey rounds. Consensus was achieved on 244 statements, including 26 statements locally generated for the second round. Almost 20% of the English statements were not endorsed (n = 50), showing the applicability of the original guidelines but also the importance of culturally adapting them. Attributions and tasks expected to be delivered by first aiders were shrunk in favour of a greater involvement of mental health professionals. Self-help strategies were mostly not endorsed and as were items relating to respecting the person’s autonomy.ConclusionsWhile panellists agreed that first aiders should be aware of human rights principles, items based on recovery principles were only partially endorsed. Further research on the dissemination of these guidelines and development of a Mental Health First Aid training course for Chile and Argentina is still required.

“I feel closer now”: experiences of relationships during and after a first episode of psychosis

ABSTRACTBackgroundSocial impairment has long been associated with psychosis, but recently a more nuanced understanding of how relationships are impacted by psychosis is emerging, taking into account both positive social changes (e.g. improved relationships, increased empathy for others) as well as challenges (e.g. stigma, shame).MethodsTen participants were recruited from two early intervention services to participate in semi-structured interviews pertaining to their lived experience of psychosis. Thematic analysis was conducted on data related to social experiences during and after psychosis.ResultsParticipants reported a wide spectrum of experiences. Social withdrawal was common and sometimes enacted to protect oneself or others. Some participants reported feelings of confusion, shame, and guilt, resulting in internalized stigma and making it difficult to navigate relationships, especially after an experience of psychosis. Many participants reported positive social changes, including new, more meaningful, and closer relationships.DiscussionRecovery and adaptation following psychosis is not a linear process, and signs of both distress and growth may occur in parallel. Likewise, social withdrawal and connection may take place simultaneously or successively. More attention should be paid in both research and practice to the myriad ways in which psychosis impacts relationships and how this matters to service users.

Automated VR therapy for improving positive self-beliefs and psychological well-being in young patients with psychosis: a proof of concept evaluation of Phoenix VR self-confidence therapy.

Low self-confidence in patients with psychosis is common. This can lead to higher symptom severity, withdrawal from activities, and low psychological well-being. There are effective psychological techniques to improve positive self-beliefs but these are seldom provided in psychosis services. With young people with lived experience of psychosis we developed a scalable automated VR therapy to enhance positive-self beliefs. The aim was to conduct a proof of concept clinical test of whether the new VR self-confidence therapy (Phoenix) may increase positive self-beliefs and psychological well-being. Twelve young patients with non-affective psychosis and with low levels of positive self-beliefs participated. Over 6 weeks, patients were provided with a stand-alone VR headset so that they could use Phoenix at home and were offered weekly psychologist meetings. The outcome measures were the Oxford Positive Self Scale (OxPos), Brief Core Schema Scale, and Warwick-Edinburgh Well-being Scale (WEMWBS). Satisfaction, adverse events and side-effects were assessed. Eleven patients provided outcome data. There were very large end-of-treatment improvements in positive self-beliefs (OxPos mean difference = 32.3; 95% CI: 17.3, 47.3; Cohen's d=3.0) and psychological well-being (WEMWBS mean difference = 11.2; 95% CI: 8.0, 14.3; Cohen's d=1.5). Patients rated the quality of the VR therapy as: excellent (n=9), good (n=2), fair (n=0), poor (n=0). An average of 5.3 (SD=1.4) appointments were attended. Uptake of the VR intervention was high, satisfaction was high, and side-effects extremely few. There were promising indications of large improvements in positive self-beliefs and psychological well-being. A randomized controlled clinical evaluation is warranted.

Self-dehumanisation in voice hearers: the end of a continuum.

Meta-dehumanisation and self-dehumanisation have been identified as potentially relevant phenomena for developing a deeper understanding of distress related to voice-hearing, particularly those experiencing voices as part of psychosis. Chadwick has previously argued that those with psychosis, including those who hear distressing voices, typically feel "dehumanised and set apart by their experiences of psychosis and trauma." The present study explores the subjective experience of self-dehumanisation in people who experience distressing voices, which was selected as a useful starting point to inform future research focused on understanding dehumanisation in people with psychosis. Qualitative data was obtained through twenty semi-structured interviews with self-identifying voice hearers and analysed using reflexive thematic analysis. This followed the recursive six phase procedure of Braun and Clarke, and this was conducted from a critical realist, contextualist position. Reflexive thematic analysis of participant's experiences produced a core theme, Dehumanisation as the End of Experiential Continua, and six subthemes: Extent of Distressing Sensory Fragmentation; Sense of Belonging with Other Humans; Integrity of Self as a Private, Coherent Entity; Sense of Worth as a Human Being; Strength of Personal Agency; and Trust in Own Credibility and Reliability. Two further themes, The Push and Pull of Dehumanising Forces and Reclaiming Life through Humanising Forces, were identified. Findings were presented to a panel of five experts by experience, all with lived experience of psychosis and service-use; all five strongly endorsed the themes as fitting with and expressing their own experiences of self-dehumanisation. Reflexive thematic analysis of voice hearers' accounts identified self-dehumanisation as the endpoint where six experiential continua coalesce. Experiential movement along these continua was affected by a range of interpersonal, intrapersonal, and societal forces over time, including dehumanising attitudes of others and voice malevolence and omnipotence. Future research might examine if and how psychological therapies aimed at those experiencing distressing voices, such as people experiencing psychosis may address feelings of self-dehumanisation.

Using focus groups to inform a brief video intervention to reduce public stigma toward Black youth living with psychosis.

Black individuals living with psychosis are at risk for stigma and marginalization due to systematic discrimination and barriers to receiving treatment. Social contact-based interventions have the potential to reduce stigma; however, interventions with elements specific to the experiences of Black youth are limited. Therefore, we aimed to gather input from Black youth living with psychosis to develop a social contact-based, brief video intervention to reduce public stigma toward Black youth with psychosis. Two 90-min focus groups were conducted with seven young Black individuals ages 18-30 with First Episode Psychosis from OnTrackNY. Participants were asked about their experiences of stigma and racial discrimination, and their perspectives on a video intervention. Focus group transcripts were analyzed using thematic content analysis. Themes that emerged included: the salience of stigma and racial experiences for some participants and not others; the linking of religiosity and symptoms in Black communities; the importance of taking responsibility for recovery as a coping strategy to counteract stigma; and mixed views on creating a video intervention specific to Black youth. Meaningful and empowering involvement of individuals with lived experience of psychosis is essential to create stigma reducing interventions. Input from Black youth living with psychosis assisted in developing a culturally tailored brief video-based intervention to reduce public stigma toward Black youth with psychosis that included information about the protagonist's experience of race and mental illness, specifically family, religious, and community-based experiences.

Narratives and recovery from negative symptoms in psychosis – a co-constructive study

Recovery is a hot topic in current psychosis literature. However, popular models on recovery, like CHIME-DTAR, fail to address the relationship with factors that might hamper recovery, like experiencing negative symptoms. This study explores how narratives can play a role in recovery from negative symptoms. As a mixed team of researchers, some with lived experience of psychosis, others with a background in clinical psychology or special needs education, we co-constructed an understanding of how narratives played a role in the experiences of Pete and Tanguy. Two major themes stood out: narratives can serve as points of support; and the importance of claiming ownership over your own narrative practice. The authors conclude that recovery can be promoted by creating opportunities for service users to articulate personal narratives and get recognition for these. Our collaborative approach not only highlighted these aspects, but also provided an opportunity for articulating narratives.

He Who Has Hope, Has Everything.

He Who Has Hope, Has Everything.

Enhancing functional recovery for young people recovering from first episode psychosis via sport-based life skills training: outcomes of a feasibility and pilot study

ABSTRACT Early intervention within First Episode Psychosis (FEP) recovery efforts support functional recovery in several ways, including increasing levels of (1) physical activity (2) life skills, and (3) social connectivity. Sport has been proposed as an ideal platform to target these three goals simultaneously. The primary aims were to assess the feasibility of utilising sport-based life skills within FEP recovery efforts and test intervention components. The secondary aim was to evaluate the potential recovery benefits. Seven young people (aged 15–25 years) with FEP participated in a six-week sport programme alongside their support workers (community and peer workers) from the service, including peer workers with a lived experience of psychosis. The programme consisted of various sporting activities, which were designed to promote physical activity, maximise social connectivity, and teach life-skills (e.g. motivation, emotional regulation, and goal-setting) that are relevant and transferrable to other contexts (e.g. school, employment, independent living). The support participants engaged with the programme at the same level as the young people, with the role of providing support and normalising/modelling engagement. The young and support participants provided feedback during and after the programme via questionnaires and interviews. Young participants self-reported physical activity levels, psychological needs, recovery dimensions, and life skills pre- and post- intervention using established psychometric tools. We used thematic analysis to analyse the qualitative data and compared this information with other data collected (e.g. attendance, feedback, quantitative measurements). The study culminated with a process evaluation. The results indicated that, despite challenges with engagement for young people with FEP, sport-based life skills programming may be a feasible and useful recovery outlet. In addition, the results highlighted specific intervention components that were useful to promote engagement and recovery benefits. This study serves as a critical foundation for future sport-based work within FEP recovery.

Fusion of Clinical and Lived Experiences of Psychosis: Lessons Learned and Implications for Future Clinical Teaching

Psychosis is a clinical syndrome that can cause significant distress leading to hospitalisation/long term stays in psychiatric services. However, limited academic evidence is available examining the lived experience of psychosis. Additionally, no evidence is available looking to combine both learned and experiential knowledge as it pertains to psychosis. As such this article was created to combine both knowledge subsets in order to provide a more complete interpretation of the syndrome itself. This was achieved through academic input from a psychiatrist’s perspective as well as a reflective, autoethnographic input from a service user who has experienced psychosis. Following this collaboration, several recommendations were made to support health professionals to engage appropriately with service users with psychosis. However, the lived experiences of psychosis itself requires further investigation to identify commonalities in experiences that can support clinicians in the diagnosis and co-production of treatment regimens for these service users.

Crisis-focused Cognitive Behavioural Therapy for psychosis (CBTp) in acute mental health inpatient settings (the CRISIS study): protocol for a pilot randomised controlled trial

BackgroundCognitive Behavioural Therapy for psychosis (CBTp) has an established evidence base and is recommended by clinical guidelines to be offered during the acute phases of psychosis. However, few research studies have examined the efficacy of CBTp interventions specifically adapted for the acute mental health inpatient context with most research trials being conducted with white European community populations.AimsThe aim of this study is to conduct a pilot randomised controlled trial (RCT), which incorporates the examination of feasibility markers, of a crisis-focused CBTp intervention adapted for an ethnically diverse acute mental health inpatient population, in preparation for a large-scale randomised controlled trial. The study will examine the feasibility of undertaking the trial, the acceptability and safety of the intervention and the suitability of chosen outcome measures. This will inform the planning of a future, fully powered RCT.MethodsA single-site, parallel-group, pilot RCT will be conducted examining the intervention. Drawing on principles of coproduction, the intervention has been adapted in partnership with key stakeholders: service users with lived experience of psychosis and of inpatient care (including those from ethnic minority backgrounds), carers, multi-disciplinary inpatient clinicians and researchers. Sixty participants with experience of psychosis and in current receipt of acute mental health inpatient care will be recruited. Participants will be randomly allocated to either the crisis-focused CBTp intervention or treatment as usual (TAU).DiscussionFindings of this pilot RCT will indicate whether a larger multi-site RCT is needed to investigate the efficacy of the intervention. If the initial results demonstrate that this trial is feasible and the intervention is acceptable, it will provide evidence that a full-scale effectiveness trial may be warranted.Trial registrationThis trial has been prospectively registered on the ISRCTN registry (ISRCTN59055607) on the 18th of February 2021.

Do recovery-oriented messages improve self-efficacy and positive emotions amongst people with lived experience of psychosis? Experimental investigation.

Recovery-oriented perspectives have become accepted worldwide as an alternative to the biomedical approach to conceptualizing and managing severe mental health problems. It has been proposed that one advantage of this is to support self-efficacy amongst people with a lived experience of psychosis, especially when recovery messages are presented by lived experience peers. The aim of the present study was to investigate the proposed psychological benefits of the recovery paradigm, by testing for possible differential impacts of recovery versus biomedical messages on self-efficacy beliefs and positive emotional state amongst people with experience of psychosis. It was hypothesized that (1) recovery-oriented messages, when presented by lived experience peers, would generate improvements in self-efficacy and positive emotions relative to biomedical messages presented by a professional and (2) recovery-oriented messages delivered by a professional would generate improvements in self-efficacy and positive emotions relative to biomedical messages delivered by a professional. We also explored whether recovery-oriented messages were more impactful when delivered by a lived experience peer versus a professional. Experimental design with three within-subject video-based conditions. Fifty-three participants with lived experience of psychosis viewed three videos: (i) people with lived experience sharing their experiences of recovery; (ii) mental health professionals presenting traditional biomedical conceptualizations of psychosis; and (iii) mental health professionals presenting recovery perspectives. Participants provided baseline clinical and demographic information, and post-viewing ratings of experienced changes in self-efficacy and emotional state. Hypothesis 1 was supported: both self-efficacy and positive emotions were significantly increased by a video of peers sharing personal recovery stories relative to professionals presenting biomedical messages. Hypothesis 2 was partially supported: when comparing videos of recovery versus biomedical messages delivered by professionals, significant relative benefits were found for positive emotions, but not self-efficacy. This experimental investigation generated a pattern of findings broadly supportive of the assumed psychological benefits of the recovery paradigm for people with lived experiences of psychosis. Findings must be interpreted with caution given the limitations of the present design, but encourage further experimental research to directly test the interpersonal impacts of the recovery paradigm.

We need more diversity and nuance in public accounts of psychosis treatment

ABSTRACT People with lived experience of psychosis now have more access than ever to share their own stories and learn about others’ via social media and public health campaigns. However, lived experience accounts that deal with race-based bias and inequity, ambivalent attitudes toward the biomedical illness model, or negative or harmful experiences of treatment remain less visible. Such accounts may help many who are experiencing psychosis to locate themselves in the narratives of others and access insights about recovery and navigating treatment which are currently absent. Future efforts to uplift diverse accounts of lived experience should involve people with lived experience as formal collaborators, make room for discussion of the shortcomings of treatment, and prioritize especially marginalized voices and perspectives.

The lived experience of psychosis: a bottom-up review co-written by experts by experience and academics.

Psychosis is the most ineffable experience of mental disorder. We provide here the first co-written bottom-up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically-informed perspectives. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud-based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self-referentiality and permeated self-world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re-establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.

Is designing therapeutic? A case study exploring the experience of co-design and psychosis

ABSTRACT Background A co-design project, consisting of individual and collective design activities, was organized with clients of a mental health service, in order to explore its potential to support people with psychosis. The group met for approximately two hours, weekly, for six months, participating in design activities and collectively deciding on the project purpose and outcome – a boardgame. Methods The experience of one group participant (Anthony) is explored, selected as the first case study within an Interpretative Phenomenological Analytical (IPA) framework. Following IPA’s ideographic focus, Anthony’s case was purposefully selected, as it portrayed a detailed picture, informing theoretical reflection on designing as therapeutic. The paper includes Anthony’s first-hand account, combined with an analysis of data from three semi-structured interviews, photographic evidence and a reflective diary kept by the lead researcher. Results Results suggest that, for Anthony, design activity: a) helps developing a sense of agency b) is experienced as grounding in reality c) contributes to the development of inter-personal relationships, and d) has a different sense of rhythm than artistic practice. Discussion These results are contextualized within literature on the lived experience of psychosis and suggest that designing can be beneficial for people with psychosis, providing the backdrop for further research and practice.

Attachment-based CBT models for psychosis: a PPI-informed approach for acute care settings

Abstract People with psychosis often have prolonged in-patient1 admissions at high personal and economic costs. This is due in part to cognitive, affective and behavioural processes that delay recovery and discharge. For many, these processes are affected by enduring insecure attachment styles. People with insecure attachment struggle to manage strong feelings when unwell, and ward staff may struggle to know how best to offer support. Here, we outline the model of interpersonal process in cognitive therapy, and how this may be adapted to capture beliefs and behaviours associated with insecure attachment. Psychological interventions in acute care often fail due to implementation issues. For this reason, and in line with current guidance on developing complex interventions, we report on a series of Patient and Public Involvement (PPI) consultations with people with lived experience of psychosis, family members and ward staff on the potential utility of these attachment-based CBT models. The PPI meetings highlighted three themes: (1) the need to improve staff–patient interactions on wards; (2) continuity in staff–patient relationships is key to recovery; and (3) advantages and barriers to an attachment-based CBT approach. We conclude by describing how the models can be implemented in routine clinical practice, and generalised across services where interpersonal cognitive and behavioural processes may contribute to delays in people’s recovery. Key learning aims (1) We need to adapt CBT models and skills to meet the needs of people in acute care. (2) People with psychosis, family members and ward staff highlight the need to improve staff–patient interactions on wards. (3) Attachment-based CBT models may be effective in conceptualising and responding more effectively to difficult interactions in these settings.

Automated Virtual Reality Cognitive Therapy for People With Psychosis: Protocol for a Qualitative Investigation Using Peer Research Methods.

BackgroundMany people with psychosis experience difficulties in everyday social situations. Anxiety can make life challenging, leading to withdrawal. Cognitive therapy, using active in vivo learning, enables people to overcome fears. These treatments are not readily available to people with psychosis. Automated virtual reality (VR) therapy is a potential route to increase accessibility. The gameChange automated VR cognitive therapy is designed to help people overcome anxious avoidance and build confidence in everyday social situations. A virtual coach guides the person through the treatment. Understanding user experience is key to facilitating future implementation. Peer research methods, in which people with lived experience of the issues being studied are involved in collecting and analyzing data, may be useful in developing this understanding. This encourages researchers to draw on their lived experience to explore participant perspectives and co-create knowledge.ObjectiveThe primary objective is to use a peer research approach to explore the participant experience of a novel automated VR therapy for anxious social avoidance. This includes understanding (1) the experience of anxious social avoidance in people with psychosis, (2) the experience of the gameChange automated VR cognitive therapy, and (3) any potential impact of the therapy in people’s lives. This will inform future implementation strategies. The secondary objective is to explore how peer research can be used to co-create knowledge.MethodsSemistructured interviews will be conducted with approximately 25 people with psychosis participating in the gameChange trial (ISRCTN17308399). Participants will be recruited from the five trial centers based in National Health Service mental health trusts across England. Interviews will be conducted by two researchers. One is a peer researcher with similar lived experience to the trial participants. The other has lived experiences of mental health issues that do not directly overlap with those of the trial participants. Interview questions will focus on an individual’s experience of anxious social avoidance, experiences of participating in the gameChange VR therapy, and any changes or impact following therapy. The interview schedule was developed in collaboration with the gameChange Lived Experience Advisory Panel (LEAP), comprising 10 project advisors with lived experience of psychosis. Interpretative phenomenological analysis and template analysis will be used to explore individual accounts. The LEAP will contribute to the analysis.ResultsData collection will be conducted from April to September 2021, and analysis will be conducted from June to October 2021. As of September 28, 2021, 20 participants had been interviewed, and coding is underway.ConclusionsThe study, employing a peer research approach, may provide a unique insight into the experiences of anxious social avoidance in people with psychosis and its treatment using automated VR therapy. This will inform potential future implementation of VR automated therapies in mental health services.International Registered Report Identifier (IRRID)DERR1-10.2196/31742

Participatory design to create a VR therapy for psychosis

This paper describes how participatory design was employed in the design of an automated Virtual Reality (VR) psychological therapy (gameChange), putting people with lived experience of psychosis at the heart of the process. Solutions to complex challenges invariably need to include the expertise and ideas of specialists from a broad variety of disciplines and experiences. The design of gameChange relied on the insights of clinical psychologists, programmers, animators, designers, product managers, producers, writers, researchers, 3 D artists, mental health advocates, and people with lived experience of psychosis. This involved a considerable diversity of working cultures, professional disciplines, and vocabulary. A transdisciplinary, participatory design process was established during the project. It allowed for rapid iteration, meaningful input from people with lived experience of psychosis, and delivered a VR psychological therapy with robust cognitive therapeutic principles. The structures put in place to support the different disciplines working together on the design, particularly people with lived experience of psychosis, are detailed in this paper, with examples of how decisions were made and their outcomes. The clinical effectiveness of the gameChange VR therapy is now being tested in a randomized controlled trial with several hundred patients with psychosis. https://gamechangevr.com/intro_video/