Views and experiences of Every Mind Matters, Public Health England’s adult mental health literacy campaign: a qualitative interview study (preprint)

Background Every Mind Matters is a publicly funded health campaign, launched in England in 2019, to equip adults to look after their mental health, and that of others, by offering online information about common problems: anxiety, low mood, sleep, stress. This study is one component of an independent evaluation of Every Mind Matters conducted by the NIHR Mental Health Policy Research Unit. Its aim is to explore individuals’ experiences and views of the Every Mind Matters campaign and website. Methods Four researchers, including three with lived experience of using mental health services, conducted 20, one-off, semi-structured, online interviews with a range of adult participants, including a sample of EMM users and a purposively recruited sub-sample known to have severe or long-term mental health conditions. The team took a codebook approach to the analysis of the transcripts and identified four main themes. Findings There was an expectation from the name Every Mind Matters that its advice would address everyone. Almost all participants had experience of mental distress and looked to Every Mind Matters for help with a current problem for themselves. All participants were complimentary about the Every Mind Matters website and found it to be user-friendly (theme 1) and personalised (theme 2) especially the interactive feature ‘Your Mind Plan quiz’ which responds with suggested actions to improve wellbeing and follows up with reminder emails. A few participants found this life changing. Some participants wanted Every Mind Matters to better acknowledge the contexts in which they live (theme 3) such as the limitations of health conditions and health services, and difficulties of crowded housing, social policy, and climate change. Many participants would like Every Mind Matters to do more (theme 4), offer more interactivity, more choice, more information about available treatments, and more stratified advice to cover more severe mental health conditions so that everyone is included. Conclusion The population that experiences common mental health difficulties is not separate from the population that has severe mental health problems. Every Mind Matters could continue and build on its success by addressing a wider range of needs.

What works for whom with telemental health? A rapid realist review (preprint)

Background: Telemental health (delivering mental health care via video calls, telephone calls or text messages) is increasingly widespread. Telemental health appears to be useful and effective in providing care to some service users in some settings, especially during an emergency restricting face-to-face contact such as the COVID-19 pandemic. However, important limitations have been reported, and telemental health implementation risks reinforcing pre-existing inequalities in service provision. If it is to be widely incorporated in routine care, a clear understanding is needed of when and for whom it is an acceptable and effective approach, and when face-to-face care is needed. Objective: The aim of this rapid realist review was to develop theory about which telemental health approaches work, or do not work, for whom, in which contexts and through what mechanisms. Methods: Rapid realist reviewing involves synthesising relevant evidence and stakeholder expertise to allow timely development of context-mechanism-outcome (CMO) configurations in areas where evidence is urgently needed to inform policy and practice. The CMOs encapsulate theories about what works for whom, and by what mechanisms. Sources included eligible papers from (a) two previous systematic reviews conducted by our team on telemental health, (b) an updated search using the strategy from these reviews, (c) a call for relevant evidence, including "grey literature", to the public and key experts, and (d) website searches of relevant voluntary and statutory organisations. CMOs formulated from these sources were iteratively refined, including through (a) discussion with an expert reference group including researchers with relevant lived experience and front-line clinicians and (b) consultation with experts focused on three priority groups: 1) children and young people, 2) users of inpatient and crisis care services, and 3) digitally excluded groups. Results: A total of 108 scientific and grey literature sources were included. From our initial CMOs, we derived 30 overarching CMOs within four domains: 1) connecting effectively; 2) flexibility and personalisation; 3) safety, privacy and confidentiality; and 4) therapeutic quality and relationship. Reports and stakeholder input emphasised the importance of personal choice, privacy and safety, and therapeutic relationships in telemental health care. The review also identified particular service users likely to be disadvantaged by telemental health implementation, and a need to ensure that face-to-face care of equivalent timeliness remains available. Mechanisms underlying successful and unsuccessful application of telemental health are discussed. Conclusions: Service user choice, privacy and safety, the ability to connect effectively and fostering strong therapeutic relationships, need to be prioritised in delivering telemental health care. Guidelines and strategies co-produced with service users and frontline staff are needed to optimise telemental health implementation in real-world settings. MS and KRKS are joint first authors.

What has changed in the experiences of people with mental health problems during the COVID-19 pandemic? Findings from follow-up interviews using a coproduced, participatory qualitative approach (preprint)

PurposeWe sought to understand how the experiences of people in the UK with pre-existing mental health conditions had developed during the course of the COVID-19 pandemic. MethodsIn September-October 2020 we interviewed adults with mental health conditions pre-dating the pandemic, whom we had previously interviewed three months earlier. Participants had been recruited through online advertising and voluntary sector community organisations. Interviews were conducted by telephone or video-conference by researchers with lived experience of mental health difficulties, and explored changes over time in peoples experience of the pandemic. ResultsWe interviewed 44 people, achieving diversity of demographic characteristics and a range of mental health conditions and service use among our sample. Three overarching themes were derived from interviews. The first theme "Spectrum of adaptation": to difficulties in access to, or the quality of, statutory mental health services, through developing new personal coping strategies or identifying alternative sources of support. The second theme is "Accumulating pressures": from pandemic-related anxieties and sustained disruption to social contact and support, and to mental health treatment. The third theme "Feeling overlooked": A sense of people with pre-existing mental health conditions being overlooked during the pandemic by policy-makers at all levels. The latter was compounded for people from ethnic minority communities or with physical health problems. ConclusionOur study highlights the need to support marginalised groups who are at risk of increased inequalities, and to maintain crucial mental and physical healthcare and social care for people with existing mental health conditions, notwithstanding challenges of the pandemic.

Service user experiences and views regarding telemental health during the COVID-19 pandemic: a co-produced framework analysis (preprint)

BackgroundThe prominence of telemental health, including providing care by video call and telephone, has greatly increased during the COVID-19 pandemic. However, there are clear variations in uptake and acceptability, and concerns that digital exclusion may exacerbate previous inequalities in accessing good quality care. Greater understanding is needed of how service users experience telemental health, and what determines whether they engage and find it acceptable. MethodsWe conducted a collaborative framework analysis of data from semi-structured interviews with a sample of people already experiencing mental health problems prior to the pandemic. Data relevant to participants experiences and views regarding telemental health during the pandemic was identified and extracted. Data collection and analysis used a participatory, coproduction approach where lived experience researchers, clinical and academic researchers contributed to all stages of data collection, analysis and interpretation of findings. FindingsParticipants experiences and preferences regarding telemental health care were dynamic and varied across time, settings, and individuals. Participants preferences were shaped by the reason for contacting providers, their relationship with the care provider, and both parties access or acceptability to use remote technology. While face-to-face care tended to be the preferred option, participants identified benefits of remote care including making care more accessible for some populations and improved efficiency for functional appointments such as prescription reviews. Participants highlighted important new challenges around safety and privacy in online settings, and gave examples of good remote care strategies, including scheduling regular phone calls and developing guidelines about how to access remote care tools. DiscussionParticipants in our study and previous literature have highlighted advantages of telemental health care, as well as significant limitations which hinder mental health support and exacerbate inequalities in access to services. Some of these limitations are seen as potentially removable, for example through staff training or better digital access for staff or service users. Others indicate a need to maintain traditional face-to-face contact at least for some appointments. There is a clear need for care to be flexible and individualised to service user circumstances and preferences. Further research is needed on ways of minimising digital exclusion and to support staff in making effective and collaborative use of relevant technologies.

Experiences of living with mental health problems during the COVID-19 pandemic in the UK: a coproduced, participatory qualitative interview study (preprint)

PurposeResearch is beginning to quantify the impact of COVID-19 on people with pre-existing mental health conditions. Our paper addresses a lack of in-depth qualitative research exploring their experiences and perceptions of how life has changed at this time. MethodsWe used qualitative interviews (N=49) to explore experiences of the pandemic for people with pre-existing mental health conditions. In a participatory, coproduced approach, researchers with lived experiences of mental health conditions conducted interviews and analysed data as part of a multi-disciplinary research team. ResultsExisting mental health difficulties were exacerbated for many people. People experienced specific psychological impacts of the pandemic, struggles with social connectedness, and inadequate access to mental health services, while some found new ways to cope and connect to community. New remote ways to access mental health care, including digital solutions, provided continuity of care for some but presented substantial barriers for others. People from black and ethnic minority (BAME) communities experienced heightened anxiety, stigma and racism associated with the pandemic, further impacting their mental health. ConclusionThere is a need for evidence-based solutions to achieve accessible and effective mental health care in response to the pandemic, especially remote approaches to care. Further research should explore the long-term impacts of COVID-19 on people with pre-existing mental health conditions. Particular attention should be paid to understanding inequalities of impact on mental health, especially for people from BAME communities.

Early impacts of the COVID-19 pandemic on mental health care and on people with mental health conditions: framework synthesis of international experiences and responses (preprint)

PurposeThe COVID-19 pandemic has many potential impacts on people with mental health conditions and on mental health care, including direct consequences of infection, effects of infection control measures and subsequent societal changes. We aimed to map early impacts of the pandemic on people with pre-existing mental health conditions and services they use, and to identify individual and service-level strategies adopted to manage these. MethodsWe searched for relevant material in the public domain published before 30 April 2020, including papers in scientific and professional journals, published first person accounts, media articles, and publications by governments, charities and professional associations. Search languages were English, French, German, Italian, Spanish, and Mandarin Chinese. Relevant content was retrieved and summarised via a rapid qualitative framework synthesis approach. ResultsWe found 872 eligible sources from 29 countries. Most documented observations and experiences rather than reporting research data. We found many reports of deteriorations in symptoms, and of impacts of loneliness and social isolation and of lack of access to services and resources, but sometimes also of resilience, effective self-management and peer support. Immediate service challenges related to controlling infection, especially in inpatient and residential settings, and establishing remote working, especially in the community. We summarise reports of swiftly implemented adaptations and innovations, but also of pressing ethical challenges and concerns for the future. ConclusionOur analysis captures the range of stakeholder perspectives and experiences publicly reported in the early stages of the COVID-19 pandemic in several countries. We identify potential foci for service planning and research.

Impact on mental health care and on mental health service users of the COVID-19 pandemic: a mixed methods survey of UK mental health care staff (preprint)

PurposeThe COVID-19 pandemic has potential to disrupt and burden the mental health care system, and to magnify inequalities experienced by mental health service users. MethodsWe investigated staff reports regarding the impact of the COVID-19 pandemic in its early weeks on mental health care and mental health service users in the UK using a mixed methods online survey. Recruitment channels included professional associations and networks, charities and social media. Quantitative findings were reported with descriptive statistics, and content analysis conducted for qualitative data. Results2,180 staff from a range of sectors, professions and specialties participated. Immediate infection control concerns were highly salient for inpatient staff, new ways of working for community staff. Multiple rapid adaptations and innovations in response to the crisis were described, especially remote working. This was cautiously welcomed but found successful in only some clinical situations. Staff had specific concerns about many groups of service users, including people whose conditions are exacerbated by pandemic anxieties and social disruptions; people experiencing loneliness, domestic abuse and family conflict; those unable to understand and follow social distancing requirements; and those who cannot engage with remote care. ConclusionThis overview of staff concerns and experiences in the early COVID-19 pandemic suggests directions for further research and service development: we suggest that how to combine infection control and a therapeutic environment in hospital, and how to achieve effective and targeted tele-health implementation in the community, should be priorities. The limitations of our convenience sample must be noted.