Experiences of living with mental health problems during the COVID-19 pandemic in the UK: a coproduced, participatory qualitative interview study
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Abstract
Purpose
Research 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.
Methods
We 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.
Results
Existing 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 the 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.
Conclusion
There 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.
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SciScore for 10.1101/2020.11.03.20225169: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: Ethical approval for a study focusing on loneliness was obtained from the UCL Research Ethics Committee on 19/12/2019 (ref: 15249/001).
Consent: Researchers responded to potential participants to check eligibility, provide a participant information sheet, answer questions and set up interviews, where informed consent was given.Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Twelve authors were women and three from BAME backgrounds. Table 2: Resources
No key resources detected.
Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data …
SciScore for 10.1101/2020.11.03.20225169: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: Ethical approval for a study focusing on loneliness was obtained from the UCL Research Ethics Committee on 19/12/2019 (ref: 15249/001).
Consent: Researchers responded to potential participants to check eligibility, provide a participant information sheet, answer questions and set up interviews, where informed consent was given.Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Twelve authors were women and three from BAME backgrounds. Table 2: Resources
No key resources detected.
Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:[4,9,12] Strengths and limitations: Embedding lived experience into study design and conduct was a strength of our approach to understanding people’s experiences of mental health during the pandemic. Interviews conducted by researchers with lived experiences can enhance disclosure, [27] while the central role of lived experience in the analysis process, and particularly in understanding inequalities of impact, further enhanced the validity of our findings. [21] Purposive sampling achieved demographic diversity, including people with a range of mental health conditions and experiences of mental health services. While we were proactive in exploring experiences of BAME people, we recognize this is not a homogenous group: the experience of different social and clinical groups requires more nuanced exploration in future studies. Because we recruited online our sample under-represents digitally excluded people whose experiences are particularly important to understand. Practice and policy implications: COVID-19 has reminded us that social determinants, including poor housing, continue to impact mental health and increase demand on services. [28] The pandemic also disrupted people’s self-care and access to essential physical health care. The role of mental health services in ensuring that people receive good physical healthcare has never been more important.[29] Increased use of remote, and especially digital, mental healthcare is advocated by governments and healthcare professional...
Results from TrialIdentifier: No clinical trial numbers were referenced.
Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
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SciScore for 10.1101/2020.11.03.20225169: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement Ethical approval for a study focusing on loneliness was obtained from the UCL Research Ethics Committee on 19/12/2019 (ref: 15249/001). Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Eleven of the LERs were female and five came from BAME backgrounds. Table 2: Resources
No key resources detected.
Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
[4,9,12] Strengths and limitations: Embedding …
SciScore for 10.1101/2020.11.03.20225169: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement Ethical approval for a study focusing on loneliness was obtained from the UCL Research Ethics Committee on 19/12/2019 (ref: 15249/001). Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Eleven of the LERs were female and five came from BAME backgrounds. Table 2: Resources
No key resources detected.
Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
[4,9,12] Strengths and limitations: Embedding lived experience into study design and conduct was a strength of our approach to understanding people’s experiences of mental health during the pandemic. Interviews conducted by researchers with lived experiences can enhance disclosure, [27] while the central role of lived experience in the analysis process, and particularly in understanding inequalities of impact, further enhanced the validity of our findings. [21] Purposive sampling achieved demographic diversity, including people with a range of mental health conditions and experiences of mental health services. While we were proactive in exploring experiences of BAME people, we recognize this is not a homogenous group: the experience of different social and clinical groups requires more nuanced exploration in future studies. Because we recruited online our sample under-represents digitally excluded people whose experiences are particularly important to understand. Practice and policy implications: COVID-19 has reminded us that social determinants, including poor housing, continue to impact mental health and increase demand on services. [28] The pandemic also disrupted people’s self-care and access to essential physical health care. The role of mental health services in ensuring that people receive good physical healthcare has never been more important. [29] Increased use of remote, and especially digital, mental healthcare is advocated by governments and healthcare professiona...
Results from TrialIdentifier: No clinical trial numbers were referenced.
Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
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