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.