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BACKGROUND: Black people in the United Kingdom disproportionately acquire long-term health conditions and are marginalised from the labour market compared with other groups. These conditions interact and reinforce high rates of unemployment among Black people with long-term health conditions. AIMS: To examine the efficacy, and experience, of employment support interventions in meeting the needs of Black service users in Britain. METHODS: A systematic literature search was conducted focusing on peer-reviewed literature featuring samples drawn from the United Kingdom. RESULTS: The literature search revealed a paucity of articles that include analysis of Black people's outcomes or experiences. Six articles met the selection criteria of the review, of which five focused on mental health impairments. No firm conclusions could be drawn from the systematic review; however, the evidence suggests that Black people are less likely than their White counterparts to secure competitive employment and that Individual Placement and Support (IPS) may be less effective for Black participants. CONCLUSIONS: We argue for a greater focus on ethnic differences in employment support outcomes with an emphasis on how such services may remediate racial differences in employment outcomes. We conclude by foregrounding how structural racism may explain the dearth of empirical evidence in this review.
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BACKGROUND: To provide a model for Public involvement (PI) in instrument development and other research based on lessons learnt in the co-production of a recently developed mental health patient reported outcome measure called Recovering Quality of Life (ReQoL). While service users contributed to the project as research participants, this paper focuses on the role of expert service users as research partners, hence referred to as expert service users or PI. METHODS: At every stage of the development, service users influenced the design, content and face validity of the measure, collaborating with other researchers, clinicians and stakeholders who were central to this research. Expert service users were integral to the Scientific Group which was the main decision-making body, and also provided advice through the Expert Service User Group. RESULTS: During the theme and item generation phase (stage 1) expert service users affirmed the appropriateness of the seven domains of the Patient Reported Outcome Measure (activity, hope, belonging and relationships, self-perception, wellbeing, autonomy, and physical health). Expert service users added an extra 58 items to the pool of 180 items and commented on the results from the face and content validity testing (stage 2) of a refined pool of 88. In the item reduction and scale generation phase (stage 3), expert service users contributed to discussions concerning the ordering and clustering of the themes and items and finalised the measures. Expert service users were also involved in the implementation and dissemination of ReQoL (stage 4). Expert service users contributed to the interpretation of findings, provided inputs at every stage of the project and were key decision-makers. The challenges include additional work to make the technical materials accessible, extra time to the project timescales, including time to achieve consensus from different opinions, sometimes strongly held, and extra costs. CONCLUSION: This study demonstrates a successful example of how PI can be embedded in research, namely in instrument development. The rewards of doing so cannot be emphasised enough but there are challenges, albeit surmountable ones. Researchers should anticipate and address those challenges during the planning stage of the project.
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Participação da Comunidade/métodos , Pesquisa sobre Serviços de Saúde/organização & administração , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Tomada de Decisões , Humanos , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Access to internet-enabled technology and Web-based services has grown exponentially in recent decades. This growth potentially excludes some communities and individuals with mental health difficulties, who face a heightened risk of digital exclusion. However, it is unclear what factors may contribute to digital exclusion in this population. OBJECTIVE: To explore in detail the problems of digital exclusion in mental health service users and potential facilitators to overcome them. METHODS: We conducted semistructured interviews with 20 mental health service users who were deemed digitally excluded. We recruited the participants from a large secondary mental health provider in South London, United Kingdom. We employed thematic analysis to identify themes and subthemes relating to historical and extant reasons for digital exclusion and methods of overcoming it. RESULTS: There were three major themes that appeared to maintain digital exclusion: a perceived lack of knowledge, being unable to access the necessary technology and services owing to personal circumstances, and the barriers presented by mental health difficulties. Specific facilitators for overcoming digital exclusion included intrinsic motivation and a personalized learning format that reflects the individual's unique needs and preferences. CONCLUSIONS: Multiple factors contribute to digital exclusion among mental health service users, including material deprivation and mental health difficulties. This means that efforts to overcome digital exclusion must address the multiple deprivations individuals may face in the offline world in addition to their individual mental health needs. Additional facilitators include fostering an intrinsic motivation to overcome digital exclusion and providing a personalized learning format tailored to the individual's knowledge gaps and preferred learning style.
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Serviços de Saúde Mental/normas , Telemedicina/métodos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
PURPOSE: Service user involvement in instrument development is increasingly recognised as important, but is often not done and seldom reported. This has adverse implications for the content validity of a measure. The aim of this paper is to identify the types of items that service users felt were important to be included or excluded from a new Recovering Quality of Life measure for people with mental health difficulties. METHODS: Potential items were presented to service users in face-to-face structured individual interviews and focus groups. The items were primarily taken or adapted from current measures and covered themes identified from earlier qualitative work as being important to quality of life. Content and thematic analysis was undertaken to identify the types of items which were either important or unacceptable to service users. RESULTS: We identified five key themes of the types of items that service users found acceptable or unacceptable; the items should be relevant and meaningful, unambiguous, easy to answer particularly when distressed, do not cause further upset, and be non-judgemental. Importantly, this was from the perspective of the service user. CONCLUSIONS: This research has underlined the importance of service users' views on the acceptability and validity of items for use in developing a new measure. Whether or not service users favoured an item was associated with their ability or intention to respond accurately and honestly to the item which will impact on the validity and sensitivity of the measure.
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Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Adolescente , Adulto , Idoso , Grupos Focais , Humanos , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Adulto JovemRESUMO
BACKGROUND: Nearly everyone in society uses the Internet in one form or another. The Internet is heralded as an efficient way of providing mental health treatments and services. However, some people are still excluded from using Internet-enabled technology through lack of resources, skills, and confidence. OBJECTIVE: Five years ago, we showed that people with severe mental illness were at risk of digital exclusion, especially middle-aged patients with psychosis and/or people from black or minority ethnic groups with psychosis. An understanding of the breadth of potential digital exclusion is vital for the implementation of digital health services. The aim of this study is to understand the context of digital exclusion for people who experience mental illness. METHODS: We conducted a survey involving people with a primary diagnosis of psychosis or depression in London, United Kingdom. A total of 241 participants were recruited: 121 with psychosis and 120 with depression. The majority of surveys were collected face-to-face (psychosis: n=109; depression: n=71). Participants answered questions regarding familiarity, access, use, motivation, and confidence with Internet-enabled technologies (ie, computers and mobile phones). Variables predicting digital exclusion were identified in regression analyses. The results were compared with the survey conducted in 2011. RESULTS: Digital exclusion has declined since 2011. Online survey collection introduced biases into the sample, masking those who were likely to be excluded. Only 18.3% (20/109) of people with psychosis in our sample were digitally excluded, compared with 30% (28/93) in 2011 (χ21=3.8, P=.04). People with psychosis had less confidence in using the Internet than people with depression (χ21=7.4, P=.004). Only 9.9% (24/241) of participants in the total sample were digitally excluded, but the majority of these people had psychosis (n=20). Those with psychosis who were digitally excluded were significantly older than their included peers (t30=3.3, P=.002) and had used services for longer (t97=2.5, P=.02). Younger people were more likely to use mobile phones. Digitally excluded participants cited a lack of knowledge as a barrier to digital inclusion, and most wanted to use the Internet via computers (rather than mobile phones). CONCLUSIONS: Digital exclusion is lower, but some remain excluded. Facilitating inclusion among this population means helping them develop skills and confidence in using technology, and providing them with access. Providing mobile phones without basic information technology training may be counterproductive because excluded people may be excluded from mobile technology too. An evidence-based digital inclusion strategy is needed within the National Health Service to help digitally excluded populations access Internet-enabled services.
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Telefone Celular , Exclusão Digital , Internet , Transtornos Mentais/terapia , Serviços de Saúde Mental , Adulto , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Inquéritos e Questionários , Fatores de Tempo , Adulto JovemRESUMO
BACKGROUND: Electronic Patient Health Records (ePHRs) contain information created, accessed, monitored and maintained by patients. This paper describes how an ePHR called myhealthlocker™ was used by people with severe mental illness to monitor and input their own health-related outcomes, and whether they derived any benefit from it. METHOD: Individuals using local secondary mental health services were provided with access to myhealthlocker, an ePHR which allowed them to monitor their health and input information from Patient Reported Outcome Measures (PROMs) across to their clinical record. Participants were given support to use myhealthlocker through drop-in sessions facilitated by an Occupational Therapist. Usage of the site was monitored over time. Surveys and interviews were used to investigate what participants thought about the intervention. RESULTS: 32 of 58 participants used the ePHR (where usage was defined by logging in at least twice and completing a PROM). Almost all participants who used the site had been referred from community rather than inpatient services. Of those who used the site, 26 out of 32 used it primarily or exclusively through supported drop-in sessions. Almost half of those participants who used the site had used it outside the drop-in sessions. Those who used the site found it useful (n = 32), and most said they would continue to use it (n = 27). There were no apparent differences in usage across gender, diagnosis, and length of service use history. Suggestions for improvement included a social networking component, and finding ways to engage clinicians. In particular, users valued the ability to monitor health outcomes over time. CONCLUSIONS: People with severe mental illness were able to use an ePHR and derive benefit from monitoring and inputting PROMs. Those who use the site are more likely to have been referred from community mental health services, and then supported to access the ePHR.
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Registros Eletrônicos de Saúde/estatística & dados numéricos , Estudos de Viabilidade , Registros de Saúde Pessoal , Transtornos Mentais/psicologia , Adolescente , Adulto , Idoso , Serviços Comunitários de Saúde Mental/métodos , Registros Eletrônicos de Saúde/instrumentação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Smartphone , Adulto JovemRESUMO
BACKGROUND: Research registers of potential participants linked to Electronic Health Records (EHRs) provide a basis for screening and identifying people suitable for studies. Such a system relies upon people joining the register and giving permission for their record to be used in this way. This study describes the process of training clinicians to explain EHR-linked research registers to service users, and to recruit them onto the register. METHOD: Training materials were developed for clinicians to help them describe the register to service users. These materials were based upon findings from focus groups reported elsewhere, they were then tested with 31 clinicians in early intervention psychosis services and each clinician discussed the register with service users on their caseload (n = 100 service users). Consultations were recorded and analysed in relation to their coverage of the training criteria. Service users also provided data on the acceptability of the process from their perspective. The content of clinicians' explanations to service users was described, and then compared against the likelihood of service users joining the register. Interpretive statistics (t-test and Chi-Squared) were used to explore differences between consultations in which service users agreed to join the register, and consultations where they did not agree to join. RESULTS: Service users appeared more likely to join the register if they felt control over what they signed up to, this necessitated understanding that they could decide when, how often, and by whom they were contacted, that joining the register did not automatically enlist them to future studies, and that they could change their mind in future. Clinicians' explanations did not always include that researchers would be able to see the service users' EHR. Service users often confused the idea of signing up to the register and signing up to studies themselves. Confidentiality was not well explained, but service users were not always concerned by confidentiality. CONCLUSION: EHR-linked research registers provide recruitment opportunities, and help service users to find out about research. Implementing these registers within mental health settings requires a trained clinical workforce and an informed service user population.
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Pesquisa Biomédica , Registros Eletrônicos de Saúde , Disseminação de Informação , Serviços de Saúde Mental , Transtornos Psicóticos , Sistema de Registros , Adolescente , Adulto , Feminino , Grupos Focais , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Encaminhamento e Consulta , Adulto JovemRESUMO
BACKGROUND: Recruitment to mental health research can be challenging. 'Consent for Contact' (C4C) is a novel framework which may expedite recruitment and contribute to equitable access to research. This paper discusses stakeholder perspectives on using a C4C model in services for people with psychosis. METHOD: This is a cross sectional study investigating the views of service users and staff using qualitative methods. Eight focus groups were recruited: five with service users (n = 26) and three with clinicians (n = 17). Purposive sampling was applied in order to reflect the local population in terms of ethnicity, experience of psychiatric services and attitudes towards research. RESULTS: Staff and service users alike associated the principle of 'consent for contact' with greater service user autonomy and favourable conditions for research recruitment. Fears around coercion and inappropriate uses of clinical records were common and most marked in service users identifying as having a negative view to research participation. Staff working in inpatient services reported that consenting for future contact might contribute to paranoid ideation. All groups agreed that implementation should highlight safeguards and the opt-in nature of the register. CONCLUSIONS: Staff and service users responded positively to C4C. Clinicians explaining C4C to service users should allay anxieties around coercion, degree of commitment, and use of records. For some service users, researcher access to records is likely to be the most challenging aspect of the consultation.
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Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Consentimento Livre e Esclarecido/psicologia , Transtornos Psicóticos/terapia , Coerção , Estudos Transversais , Feminino , Grupos Focais , Hospitalização , Humanos , Masculino , Corpo Clínico Hospitalar/psicologia , Serviços de Saúde Mental/estatística & dados numéricos , Seleção de Pacientes , Transtornos Psicóticos/psicologia , Pesquisa Qualitativa , Encaminhamento e Consulta , Sistema de Registros , Pesquisadores/psicologiaRESUMO
BACKGROUND: Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout. METHODS: There were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team. RESULTS: Service users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR. CONCLUSIONS: We outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal.
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Comportamento Cooperativo , Registros Eletrônicos de Saúde/tendências , Registros de Saúde Pessoal , Transtornos Mentais/diagnóstico , Desenvolvimento de Programas/métodos , Índice de Gravidade de Doença , Adulto , Feminino , Necessidades e Demandas de Serviços de Saúde/tendências , Humanos , Masculino , Transtornos Mentais/epidemiologia , Transtornos Mentais/terapia , Saúde Mental/tendências , Pessoa de Meia-Idade , Fatores de TempoRESUMO
Narratives describing first-hand experiences of recovery from mental health problems are widely available. Emerging evidence suggests that engaging with mental health recovery narratives can benefit people experiencing mental health problems, but no randomized controlled trial has been conducted as yet. We developed the Narrative Experiences Online (NEON) Intervention, a web application providing self-guided and recommender systems access to a collection of recorded mental health recovery narratives (n=659). We investigated whether NEON Intervention access benefited adults experiencing non-psychotic mental health problems by conducting a pragmatic parallel-group randomized trial, with usual care as control condition. The primary endpoint was quality of life at week 52 assessed by the Manchester Short Assessment (MANSA). Secondary outcomes were psychological distress, hope, self-efficacy, and meaning in life at week 52. Between March 9, 2020 and March 26, 2021, we recruited 1,023 participants from across England (the target based on power analysis was 994), of whom 827 (80.8%) identified as White British, 811 (79.3%) were female, 586 (57.3%) were employed, and 272 (26.6%) were unemployed. Their mean age was 38.4±13.6 years. Mood and/or anxiety disorders (N=626, 61.2%) and stress-related disorders (N=152, 14.9%) were the most common mental health problems. At week 52, our intention-to-treat analysis found a significant baseline-adjusted difference of 0.13 (95% CI: 0.01-0.26, p=0.041) in the MANSA score between the intervention and control groups, corresponding to a mean change of 1.56 scale points per participant, which indicates that the intervention increased quality of life. We also detected a significant baseline-adjusted difference of 0.22 (95% CI: 0.05-0.40, p=0.014) between the groups in the score on the "presence of meaning" subscale of the Meaning in Life Questionnaire, corresponding to a mean change of 1.1 scale points per participant. We found an incremental gain of 0.0142 quality-adjusted life years (QALYs) (95% credible interval: 0.0059 to 0.0226) and a £178 incremental increase in cost (95% credible interval: -£154 to £455) per participant, generating an incremental cost-effectiveness ratio of £12,526 per QALY compared with usual care. This was lower than the £20,000 per QALY threshold used by the National Health Service in England, indicating that the intervention would be a cost-effective use of health service resources. In the subgroup analysis including participants who had used specialist mental health services at baseline, the intervention both reduced cost (-£98, 95% credible interval: -£606 to £309) and improved QALYs (0.0165, 95% credible interval: 0.0057 to 0.0273) per participant as compared to usual care. We conclude that the NEON Intervention is an effective and cost-effective new intervention for people experiencing non-psychotic mental health problems.
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"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.
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BACKGROUND: Automated virtual reality (VR) therapy has the potential to substantially increase access to evidence-based psychological treatments. The results of a multicenter randomized controlled trial showed that gameChange VR cognitive therapy reduces the agoraphobic avoidance of people diagnosed with psychosis, especially for those with severe avoidance. OBJECTIVE: We set out to use a peer research approach to explore participants' experiences with gameChange VR therapy. This in-depth experiential exploration of user experience may inform the implementation in clinical services and future VR therapy development. METHODS: Peer-led semistructured remote interviews were conducted with 20 people with a diagnosis of psychosis who had received gameChange as part of the clinical trial (ISRCTN17308399). Data were analyzed using interpretative phenomenological analysis and template analyses. A multiperspectival approach was taken to explore subgroups. Credibility checks were conducted with the study Lived Experience Advisory Panel. RESULTS: Participants reported the substantial impact of anxious avoidance on their lives before the VR intervention, leaving some of them housebound and isolated. Those who were struggling the most with agoraphobic avoidance expressed the most appreciation for, and gains from, the gameChange therapy. The VR scenarios provided "a place to practise." Immersion within the VR scenarios triggered anxiety, yet participants were able to observe this and respond in different ways than usual. The "security of knowing the VR scenarios are not real" created a safe place to learn about fears. The "balance of safety and anxiety" could be calibrated to the individual. The new learning made in VR was "taken into the real world" through practice and distilling key messages with support from the delivery staff member. CONCLUSIONS: Automated VR can provide a therapeutic simulation that allows people diagnosed with psychosis to learn and embed new ways of responding to the situations that challenge them. An important process in anxiety reduction is enabling the presentation of stimuli that induce the original anxious fears yet allow for learning of safety. In gameChange, the interaction of anxiety and safety could be calibrated to provide a safe place to learn about fears and build confidence. This navigation of therapeutic learning can be successfully managed by patients themselves in an automated therapy, with staff support, that provides users with personalized control. The clinical improvements for people with severe anxious avoidance, the positive experience of VR, and the maintenance of a sense of control are likely to facilitate implementation.
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Partnering with people most affected by mental health problems can transform mental health outcomes. Citizen science as a research approach enables partnering with the public at a substantial scale, but there is scarce guidance on its use in mental health research. To develop best practise guidelines for conducting and reporting research, we conducted a systematic review of studies reporting mental health citizen science research. Documents were identified from electronic databases (n = 10), grey literature, conference proceedings, hand searching of specific journals and citation tracking. Document content was organised in NVIVO using the ten European Citizen Science Association (ECSA) citizen science principles. Best practise guidelines were developed by (a) identifying approaches specific to mental health research or where citizen science and mental health practises differ, (b) identifying relevant published reporting guidelines and methodologies already used in mental health research, and (c) identifying specific elements to include in reporting studies. A total of 14,063 documents were screened. Nine studies were included, from Australia, Belgium, Canada, Denmark, Netherlands, Spain, the UK, and the United States. Citizen scientists with lived experience of mental health problems were involved in data collection, analysis, project design, leadership, and dissemination of results. Most studies reported against some ECSA principles but reporting against these principles was often unclear and unstated. Best practise guidelines were developed, which identified mental health-specific issues relevant to citizen science, and reporting recommendations. These included citizen science as a mechanism for empowering people affected by mental health problems, attending to safeguarding issues such as health-related advice being shared between contributors, the use of existing health research reporting guidelines, evaluating the benefits for contributors and impact on researchers, explicit reporting of participation at each research stage, naming the citizen science platform and data repository, and clear reporting of consent processes, data ownership, and data sharing arrangements. We conclude that citizen science is feasible in mental health and can be complementary to other participatory approaches. It can contribute to active involvement, engagement, and knowledge production with the public. The proposed guidelines will support the quality of citizen science reporting.
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Introduction: Informal carers of people with mental health problems often have unmet support needs. Mental health recovery narratives are increasingly accessible, but their relevance to and effect on informal carers have been minimally investigated. The Narrative Experiences Online (NEON) Intervention is a first-in-field intervention that provides informal carers with access to a diverse collection of recorded mental health recovery narratives. This trial aimed to examine the feasibility and acceptability of the NEON Intervention for informal carers. Methods: This study involved a two-arm feasibility randomized controlled trial. Carers were randomly assigned to receiving versus not receiving the NEON Intervention. The feasibility aspects investigated included the acceptability of the intervention and of randomization, trial processes, engagement rates, recruitment procedures, attrition, sample size estimation, identification of candidate primary and secondary outcomes, and the feasibility of conducting a definitive trial. A qualitative process evaluation was conducted. Findings: A total of 121 carers were eligible, of whom 54 were randomized (intervention: 27, control: 27). Twelve-month follow-up data were available for 36 carers. Carers accessed a mean of 25 narratives over a 12-month period, and the intervention group, compared with the control group, reported a small effect on hope and a moderate effect on the presence of meaning in life. Five modifications were recommended to improve the user experience, applicability, and trial processes. Discussion: The NEON Intervention is feasible and acceptable. Significant refinement of the NEON Intervention and trial processes is required to personalize and ensure applicability to carers. Further feasibility testing is recommended prior to a definitive trial.
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BACKGROUND: The Feeling Safe Programme is a cognitive therapy developed to improve outcomes for individuals with persecutory delusions. It is theoretically driven, modular and personalised, with differences in therapeutic style and content compared with first-generation cognitive behavioural therapy for psychosis. OBJECTIVES: We set out to understand the participant experience of the Feeling Safe Programme. DESIGN: A qualitative study employing interpretative phenomenological analysis. METHODS: Using a peer research approach, semi-structured face-to-face interviews were conducted with six people who had received the Feeling Safe Programme as part of the outcome clinical trial. RESULTS: Participants spoke of feeling 'unsafe' in their daily lives before the intervention. Openness to the intervention, facilitated by identification with the programme name, and willingness to take an active role were considered important participant attributes for successful outcomes. The therapist was viewed as a professional friend who cared about the individual, which enabled trust to form and the opportunity to consider new knowledge and alternative perspectives. Doing difficult tasks gradually and repeatedly to become comfortable with them was important for change to occur. The intervention helped people to do ordinary things that others take for granted and was perceived to produce lasting changes. CONCLUSIONS: The Feeling Safe Programme was subjectively experienced very positively by interview participants, which is consistent with the results of the clinical trial. The successful interaction of the participant and therapist enabled trust to form, which meant that repeated practice of difficult tasks could lead to re-engagement with valued everyday activities.
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Terapia Cognitivo-Comportamental , Transtornos Psicóticos , Humanos , Terapia Cognitivo-Comportamental/métodos , Delusões/terapia , Delusões/psicologia , Emoções , Transtornos Psicóticos/terapia , Transtornos Psicóticos/psicologia , Pesquisa Qualitativa , Ensaios Clínicos como AssuntoRESUMO
BACKGROUND: The high prevalence of mental distress among university students is gaining academic, policy and public attention. As the volume of research into student mental health increases, it is important to involve students to ensure that the evidence produced can translate into meaningful improvements. AIMS: For the first time, we consult UK students about their research priorities on student mental health. METHOD: This priority setting exercise involved current UK university students who were asked to submit three research questions relating to student mental health. Responses were aggregated into themes through content analysis and considered in the context of existing research. Students were involved throughout the project, including inception, design, recruitment, analysis and dissemination. RESULTS: UK university students (N = 385) submitted 991 questions, categorised into seven themes: epidemiology, causes and risk factors, academic factors and work-life balance, sense of belonging, intervention and services, mental health literacy and consequences. Across themes, respondents highlighted the importance of understanding the experience of minority groups. CONCLUSIONS: Students are interested in understanding the causes and consequences of poor mental health at university, across academic and social domains. They would like to improve staff and students' knowledge about mental health, and have access to evidence-based support. Future research should take a broad lens to evaluate interventions; considering how services are designed and delivered, and investigating institutional and behavioural barriers to accessibility, including how this varies across different groups within the student population.
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BACKGROUND: People with severe mental illnesses (SMI) such as schizophrenia die on average 15 to 20 years earlier than everyone else. Two thirds of these deaths are from preventable physical illnesses such as hypertension, cardiovascular disease, and diabetes, which are worsened by weight gain. Antipsychotics are associated with significant weight gain. In REalist Synthesis Of non-pharmacologicaL interVEntions (RESOLVE), a realist synthesis, combining primary and secondary data, will be used to understand and explain how, why, for whom, and in what contexts non-pharmacological interventions can help service users to manage antipsychotic-induced weight gain. METHODS: A five-step approach will be used to develop guidance: 1. Developing the initial programme theory An initial (candidate) programme theory, which sets out how and why outcomes occur within an intervention, will be developed. 2. Developing the search The initial programme theory will be refined using academic and grey literature. The proposed initial sampling frame are as follows: Context: people living with SMI, taking antipsychotics, different types of SMI. INTERVENTION: non-pharmacological interventions. MECHANISMS: triggered by the intervention. Outcomes e.g. weight, metabolic adverse events, quality of life, adherence, burden, economic. Searching for relevant documents will continue until sufficient data is found to conclude that the refined programme theory is coherent and plausible. Lived experience (service users) and stakeholder (practitioners) groups will provide feedback. 3. Selection, appraisal and data extraction Documents will be screened against inclusion and exclusion criteria. The text extracted from these documents will be coded as contexts, mechanisms and their relationships to outcomes. 4. Primary data collection Realist interviews with up to 30 service users and informal carers, and 20 practitioners will gather data to support, refute or refine the programme theory. 5. Data analysis A realist logic of analysis will be used to develop and refine the programme theory from secondary and primary data. The analysis will aim to identify practical intervention strategies to change contexts so that key mechanisms are triggered to produce desired outcomes. Guidance will be produced based on these strategies. DISCUSSION: This realist synthesis aims to develop guidance for service users and practitioners on the most appropriate interventional strategies to manage and limit antipsychotic weight gain. SYSTEMATIC REVIEW REGISTRATION: PROSPERO: CRD42021268697.
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Antipsicóticos , Transtornos Mentais , Antipsicóticos/efeitos adversos , Atenção à Saúde , Humanos , Transtornos Mentais/terapia , Guias de Prática Clínica como Assunto , Qualidade de Vida , Revisões Sistemáticas como Assunto , Aumento de Peso/efeitos dos fármacosRESUMO
BACKGROUND: Little is known about service users' views of measures used to evaluate treatments in mental health. AIMS: To identify the views of people with psychosis and affective disorder about the relevance and acceptability of commonly used outcome measures. METHODS: Twenty-four widely used outcome measures were presented to expert groups of service users. Nominal group methods were used to develop consensus about the appropriateness of each measure. Comments made by service users about how outcomes should be assessed were also recorded. RESULTS: Group members expressed concern about the ability of some outcome measures to capture their experiences. Patient-rated measures were assessed as more relevant and appropriate than staff-rated measures, and the need to examine negative as well as the positive effects of treatments was emphasised. Specific concerns were raised about some widely used measures including the Global Assessment of Functioning and the European Quality of Life scale. CONCLUSIONS: We consider it essential that service users' views are taken into account when selecting measures to evaluate treatment outcomes. Providing insight into views of users of mental health services, our findings serve as a starting point for discussion.
Assuntos
Serviços de Saúde Mental/estatística & dados numéricos , Transtornos do Humor/reabilitação , Avaliação de Resultados em Cuidados de Saúde/métodos , Satisfação do Paciente/estatística & dados numéricos , Transtornos Psicóticos/reabilitação , Adulto , Feminino , Humanos , Londres , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricosRESUMO
BACKGROUND: Many 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. OBJECTIVE: The 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. METHODS: Semistructured 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. RESULTS: Data 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. CONCLUSIONS: The 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.