A qualitative investigation using peer research methods of automated virtual reality cognitive therapy for people with psychosis: study protocol. (Preprint)

2021 ◽  
Author(s):  
Jessica Bond ◽  
Dan J Robotham ◽  
Alexandra Kenny ◽  
Vanessa Pinfold ◽  
Thomas Kabir ◽  
...  
Keyword(s):  
Mental Health ◽  
Virtual Reality ◽  
Lived Experience ◽  
Cognitive Therapy ◽  
Research Methods ◽  
Advisory Panel ◽  
Research Approach ◽  
Social Avoidance ◽  
Social Situations ◽  
Trial Participants

BACKGROUND Many people with psychosis struggle in everyday social situations. Anxiety can make life challenging, leading to withdrawal. Cognitive therapy, using active in-vivo learning, enables people to overcome fears. Yet these treatments are not readily available to people with psychosis. Automated virtual reality (VR) therapy may be one 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 (such as visiting a café or taking a bus). A virtual coach guides the person through the treatment. Understanding user experience will be key to facilitating future implementation. Peer-research methods, where people with lived experience of issues being studied are involved in collecting and analysing the data, may be useful in developing this understanding. This approach encourages researchers to draw on their lived experience to explore participant perspectives and co-create knowledge. OBJECTIVE The primary objective of this study 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 peoples’ lives. This will inform future implementation strategies. The secondary objective is to explore how peer research can be used to co-create knowledge. METHODS Semi-structured interviews will be conducted with approximately 25 people with psychosis who are participating in the gameChange trial (ISRCTN17308399). Participants will be recruited from the five trial centres based in NHS mental health Trusts across England. Interviews will be conducted by two researchers. One is a peer-researcher with similar lived experience of mental health to the trial participants. The other has lived experience 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, the experience of participating in the gameChange VR therapy, and any changes or impact following the therapy. The interview schedule was developed in collaboration with the gameChange Lived Experience Advisory Panel (LEAP); a group of ten project advisors with lived experience of psychosis. Interpretative Phenomenological Analysis and Template Analysis will be used to explore individual accounts as well as convergence and divergence across the sample. The LEAP will contribute to the analysis. RESULTS Data collection will be conducted April - August 2021, analysis conducted June – October 2021. CONCLUSIONS The study, employing a peer-research approach, may provide a unique insight into 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.

Health in a connected world

2020 ◽  
pp. 573-580
Author(s):  
Philippe Delespaul ◽  
Catherine van Zelst
Keyword(s):  
Mental Health ◽  
Virtual Reality ◽  
Lived Experience ◽  
Therapeutic Relationship ◽  
Social Relationships ◽  
Daily Life ◽  
Mental Healthcare ◽  
Well Being ◽  
Service Users ◽  
Changing World

This chapter is about a redesign of mental healthcare, as it evolves in a changing world. It focuses on digital transformations and their impact on social relationships, networks, and communities. It intends to demonstrate better responses to the needs of service users in society. It first defines terminologies to access the changing world and focus on how to understand health, recovery, and well-being in people with lived experience of psychosis. These central elements can be accessed or maintained using eHealth, including mHealth, virtual reality, and eCommunities. It also discuss strengths, challenges, and pitfalls in developing and applying innovative interventions in the context of daily life. It reviews these trends and how these relate to the therapeutic relationship in general, and the mental health practitioner’s role in particular.

scholarly journals Virtual Reality Cognitive Therapy in Inpatient Psychiatric Wards: Protocol for a Qualitative Investigation of Staff and Patient Views Across Multiple National Health Service Sites

10.2196/20300 ◽  
2020 ◽  
Vol 9 (8) ◽  
pp. e20300
Author(s):  
Poppy Brown ◽  
Felicity Waite ◽  
Sinéad Lambe ◽  
Laina Rosebrock ◽  
Daniel Freeman
Keyword(s):  
Mental Health ◽  
Virtual Reality ◽  
National Health Service ◽  
Focus Group ◽  
Health Service ◽  
Focus Groups ◽  
Cognitive Therapy ◽  
National Health ◽  
Psychiatric Hospitals ◽  
Implementation Framework

Background Patients in psychiatric wards typically have very limited access to individual psychological therapy. Inpatients often have significant time available, and an important transition back to everyday life to prepare for—but historically, there have been few trained therapists available on wards for the delivery of evidence-based therapy. Automated virtual reality (VR) therapy may be one route to increase the provision of powerful psychological treatments in psychiatric hospitals. The gameChange automated VR cognitive therapy is targeted at helping patients overcome anxious avoidance and re-engage in everyday situations (such as walking down the street, taking a bus, or going to a shop). This treatment target may fit well for many patients preparing for discharge. However, little is known about how VR therapy may be viewed in this setting. Objective The objectives of the study are to explore psychiatric hospital staff and patients’ initial expectations of VR therapy, to gather patient and staff views of an automated VR cognitive therapy (gameChange) after briefly experiencing it, and to identify potential differences across National Health Service (NHS) mental health trusts for implementation. Guided by an implementation framework, the knowledge gained from this study will be used to assess the feasibility of VR treatment adoption into psychiatric hospitals. Methods Focus groups will be conducted with NHS staff and patients in acute psychiatric wards at 5 NHS mental health trusts across England. Staff and patients will be interviewed in separate groups. Individual interviews will also be conducted when preferred by a participant. Within each of the 5 trusts, 1 to 2 wards will be visited. A total of 8-15 staff and patients per ward will be recruited, with a minimum total of 50 staff and patients recruited across all sites. Focus group questions have been derived from the nonadoption, abandonment, and challenges to the scale-up, spread, and sustainability (NASSS) framework. Focus groups will discuss expectations of VR therapy before participants are given the opportunity to briefly try the gameChange VR therapy. Questions will then focus on opinions about the therapy and investigate feasibility of adoption, with particular consideration given to site specific issues. A thematic analysis will be conducted. Results As of May 15, 2020, 1 patient focus group has been conducted. Conclusions The study will provide unique insight from patients and staff into the potential for implementing automated VR therapy in psychiatric wards. Perspectives will be captured both on the use of immersive technology hardware and therapy-specific issues in such settings. International Registered Report Identifier (IRRID) DERR1-10.2196/20300

scholarly journals Reflections on my role as a mental health service user co-applicant in a randomized control trial

2020 ◽  
Vol 4 (1) ◽  
pp. 33-46
Author(s):  
Laura Lea ◽  
Sarah Byford ◽  
Yve Coney ◽  
Rebecca Crane ◽  
Natalia Fagabemi ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Randomized Control Trial ◽  
Public Involvement ◽  
Steering Committee ◽  
Trial Steering Committee ◽  
Advisory Panel ◽  
Behaviour Therapy ◽  
Cognitive Behaviour ◽  
Randomized Control

This is not a research paper but a personal and collective reflection of patient and public involvement (PPI) for the LIGHTMind 2 randomized control trial (www. isrctn. com/ISRCTN13495752). This trial compares two guided self-help psychological interventions for depression, and is delivered in the UK NHS Improving Access to Psychological Therapy services. The paper is the result of my reviewing our PPI 18 months into the trial. The PPI includes myself as a research team member and co-applicant, with lived experience of depression, mindfulness and cognitive behaviour therapy. There is a Lived Experience Advisory Panel of six people with lived experience of depression or mindfulness, who advise the researchers. Two people with lived experience of mental health difficulties and knowledge of PPI attend the Trial Steering Committee. This paper includes comments from some of the other people with lived experience and from researchers involved in the trial, included as co-authors. I offer the Johari window (Luft, 1970) and the 4Pi National Involvement Standards (NSUN, 2018) as a way of positioning the value of PPI. Developing relationships within PPI is identified as a way of moderating the fear that some people experience as they work with researchers. I describe the importance of principles that incorporate explicit statements about the value of PPI.

scholarly journals Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention

10.2196/24417 ◽  
2021 ◽  
Vol 5 (5) ◽  
pp. e24417
Author(s):  
Mike Slade ◽  
Stefan Rennick-Egglestone ◽  
Joy Llewellyn-Beardsley ◽  
Caroline Yeo ◽  
James Roe ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Digital Health ◽  
Health Interventions ◽  
Advisory Panel ◽  
Service Users ◽  
Impact Model ◽  
Harm Minimization ◽  
Web Based ◽  
Recovery Narratives

Background The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). Objective This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. Methods Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. Results KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. Conclusions RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

scholarly journals Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention (Preprint)

2020 ◽  
Author(s):  
Mike Slade ◽  
Stefan Rennick-Egglestone ◽  
Joy Llewellyn-Beardsley ◽  
Caroline Yeo ◽  
James Roe ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Digital Health ◽  
Health Interventions ◽  
Advisory Panel ◽  
Service Users ◽  
Impact Model ◽  
Harm Minimization ◽  
Web Based ◽  
Recovery Narratives

BACKGROUND The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing <i>recovery</i> from health problems are a focus of research, including those presented in <i>recorded</i> (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). OBJECTIVE This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. METHODS Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. RESULTS KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. CONCLUSIONS RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

The Social and Emotional Impact of Involving Individuals With Mental Illness in the Research Process

2019 ◽  
Vol 29 (11) ◽  
pp. 1634-1640 ◽  
Author(s):  
Aliza Werner-Seidler ◽  
Frances Shaw
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Lived Experience ◽  
Qualitative Interviews ◽  
Research Process ◽  
Mental Health Research ◽  
Advisory Panel ◽  
Emotional Impact ◽  
Social And Emotional ◽  
The Social

There is a need to involve individuals with a lived experience in health and medical research. Some organizations have developed mechanisms to seek the input of people with a lived experience. However, there are few examples of qualitative research into the impacts of participation. In this study, we investigate the social and emotional impact of participation on individuals, as well as the perceived impact on the organization, in an advisory panel at an Australian mental health research institute. In-depth qualitative interviews were conducted with 50% of the participants on the panel to understand how they conceptualized their involvement. Participants became invested in the organization and their role within it, and found it personally valuable to access diverse perspectives and discuss mental health outside a treatment context. These findings suggest that participating in the research process is beneficial to individuals with a lived experience of mental illness.

scholarly journals Active ingredient ‘Better gut microbiome function’

2020 ◽  
Author(s):  
Kathrin Cohen Kadosh ◽  
Melissa Basso ◽  
Paul Knytl ◽  
Nicola Johnstone ◽  
Jennifer Y F Lau ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Gut Microbiome ◽  
Dietary Intervention ◽  
Meta Analysis ◽  
Sensitive Period ◽  
Research Approach ◽  
Post Intervention ◽  
Healthy Human ◽  
Meta Analyses

SummaryBackgroundThe human gut microbiome and its effect on brain function and mental health is emerging as an area of intensive research. Both animal and human research point towards adolescence as a sensitive period when the gut-brain axis is fine-tuned, and when we can use dietary intervention to change the microbiome, with long-lasting consequences for mental health. Here we report the results of a systematic review/meta-analysis of microbiota-targeted (psychobiotics) interventions on anxiety in youth, together with a summary of consultation work of youth with lived experience.MethodsSeven databases were searched (no date cut-offs), and controlled trials in clinical and healthy human samples (age range: 10-24) seeking to reduce anxiety were included. All data on between group-differences post intervention and outcomes were extracted as standard mean differences (SMDs) and pooled together based on a random-effects model.Findings5416 studies were identified, 14 were eligible for the qualitative summary, of which 10 were included in the meta-analyses (total of 324 experimental and 293 control subjects). The heterogeneity I2 was12% and the pooled SMD was −0.04 (95% CI: −0.21, 0.14). One study presented with low bias risk whereas 5 with high and 4 with uncertain risk, accounting for that, sensitivities analysis revealed a SMD of −0.16 (95%CI: −0.39, 0.06).InterpretationThere is currently limited evidence for use of psychobiotics to treat anxiety in youth. However, future progress will require a multidisciplinary research approach, which gives priority to specifying mechanisms in the human models, providing causal understanding and addressing the wider context.

Co-production in mental health research: reflections from the People Study

2015 ◽  
Vol 20 (4) ◽  
pp. 220-231 ◽  
Author(s):  
Vanessa Pinfold ◽  
Paulina Szymczynska ◽  
Sarah Hamilton ◽  
Richard Peacocke ◽  
Shirley Dean ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Health Research ◽  
Empirical Studies ◽  
Theoretical Work ◽  
Mental Health Research ◽  
Primary Objective ◽  
Lessons Learned ◽  
Advisory Panel ◽  
Content Type

Purpose – The purpose of this paper is to reflect on the process of co-producing mental health research where work was shared between university academics, charity-based researchers and a Lived Experience Advisory Panel. Design/methodology/approach – The authors express the opinions of a research team made up of people with experience of using mental health services, being carers and being academically trained researchers from a range of health and social science disciplines. Some had experience in several areas. The paper is co-produced to provide collective reflection and recommendations. Findings – Co-production of research is not well documented in published literature. The authors believe there is scope to develop co-production approaches, but further conceptual and theoretical work is needed alongside empirical studies. A socially situated complex research project, possibly involving multi-stakeholder groups, demands flexibility in approach. Similarly to user-controlled and other emancipatory methodologies, co-production makes the democratisation of research a primary objective in order to produce better quality and more relevant studies. Co-production also addresses inequalities in power and control within research projects; this way of working does provide a healthy challenge to traditional research hierarchies. Practical implications – Lessons learned should be honestly shared to develop co-production research methods. Projects need to have a strategy for how to value different contributions and facilitate constructive relationships if discord emerges. Establishing clear project roles, expectations and process for payment are essential in developing genuine collaborative partnerships. Originality/value – It is a viewpoint paper.

scholarly journals Psychobiotic interventions for anxiety in young people: a systematic review and meta-analysis, with youth consultation

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Kathrin Cohen Kadosh ◽  
Melissa Basso ◽  
Paul Knytl ◽  
Nicola Johnstone ◽  
Jennifer Y. F. Lau ◽  
...  
Keyword(s):  
Mental Health ◽  
Systematic Review ◽  
Lived Experience ◽  
Health Management ◽  
Meta Analysis ◽  
Sensitive Period ◽  
Research Approach ◽  
Dietary Interventions ◽  
Post Intervention ◽  
Mean Differences

AbstractThe human gut microbiome influence on brain function and mental health is an emerging area of intensive research. Animal and human research indicates adolescence as a sensitive period when the gut-brain axis is fine-tuned, where dietary interventions to change the microbiome may have long-lasting consequences for mental health. This study reports a systematic review and meta-analysis of microbiota-targeted (psychobiotics) interventions on anxiety in youth, with discussion of a consultation on the acceptability of psychobiotic interventions for mental health management amongst youth with lived experience. Six databases were searched for controlled trials in human samples (age range: 10–24 years) seeking to reduce anxiety. Post intervention outcomes were extracted as standard mean differences (SMDs) and pooled based on a random-effects model. 5416 studies were identified: 14 eligible for systematic review and 10 eligible for meta-analysis (total of 324 experimental and 293 control subjects). The meta-analysis found heterogeneity I2 was 12% and the pooled SMD was −0.03 (95% CI: −0.21, 0.14), indicating an absence of effect. One study presented with low bias risk, 5 with high, and 4 with uncertain risk. Accounting for risk, sensitivities analysis revealed a SMD of −0.16 (95% CI: −0.38, 0.07), indicative of minimal efficacy of psychobiotics for anxiety treatment in humans. There is currently limited evidence for use of psychobiotics to treat anxiety in youth. However, future progress will require a multidisciplinary research approach, which gives priority to specifying mechanisms in the human models, providing causal understanding, and addressing the wider context, and would be welcomed by anxious youths.

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