Using participatory action research methods to address epistemic injustice within mental health research and the mental health system

Mooney, Roisin; Dempsey, Clair; Brown, Brian; Keating, Frank; Joseph, Doreen; Bhui, Kamaldeep

doi:10.3389/fpubh.2023.1075363

Cited by 4 publications

References 24 publications

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Preserving Dignity and Epistemic Justice in Palliative Care for Patients with Serious Mental Health Problems

Grassi,

Cruciata,

Belvederi Murri

et al. 2024

Epistemic Justice in Mental Healthcare

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Dignity and preservation of dignity have emerged as a central and mandatory aim to pursue in all the areas of medicine, including palliative care. People with severe mental disorders (SMI) who are at the end of life pose further challenges because of the problem of stigma, which is intrinsically imbued in palliative care, as well as of other the variables including marginalization, alienation, and epistemic injustice typically associated with mental illness and psychiatry. A person-centred approach, which promotes a medicine of the person, for the person, by the person, and with the person, can increase the sense of personal dignity, as the other side of stigma, and epistemic justice for patients with SMI who are at the end of life. Dignity-oriented intervention, such as Dignity Therapy, can also be applied in palliative care settings for people with SMI with the aim to offer them an opportunity to reflect upon crucial existential and relational issues, to review aspects of their lives and of self, and to help in preparing a legacy of memories, words of love and wisdom with significant others.

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Preserving Dignity and Epistemic Justice in Palliative Care for Patients with Serious Mental Health Problems

Grassi,

Cruciata,

Belvederi Murri

et al. 2024

Epistemic Justice in Mental Healthcare

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Racialised experience of detention under the Mental Health Act: a photovoice investigation of practice, policy and legislation

Bhui,

Mooney,

Joseph

et al. 2024

Preprint

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Background: The rates of compulsory admission and treatment (CAT) are rising in mental health systems in the UK. These disparities are reported among migrants and black and ethnic minorities in Europe and North America. Lived experience perspectives from marginalised and multiple disadvantaged people are neglected in research yet may offer vital and novel insights into preventive opportunities to reduce coercive care Methods: We conducted a participatory photovoice research process to assemble the life-experiences of people within two years of receiving CAT. We purposively sampled to maximise diversity by age, ethnicity, and different sections of the Mental Health Act (England & Wales, 1983, 2007) from 8 health systems in England. The images, captions, and reflective narratives were deepened over 3 workshops before thematic analysis. Outcomes: Forty-eight ethnically diverse people with lived experience of CAT contributed over 500 images and 30 hours of transcribed narratives. Participants lives showed significant complexity in terms of multimorbidity, adverse childhood experiences, and carer roles. The findings suggest insufficient co-ordination to prevent CAT despite early help-seeking, not being taken seriously when seeking help, hostility and dismissive responses from professionals; unnecessary police involvement which was distressing, stigmatising, and risked criminalisation. Participants wanted more advocacy given their vulnerability and inability to process information in crisis, as well as therapeutic and creative activities in inpatient environments. Participants recommended more family and carer involvement, and more appropriate, frequent and personalised information about care options, appeals processes, levels of restriction, and seclusion. A major concern was the lack of highly skilled staff, trauma-informed care, and therapies into the community. Interpretation: We showed epistemic injustice in care processes and recommend better standards for essential skills, prevention, trauma informed care and therapies. Criminalising and coercive responses must also be reduced.

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What Do We Know About Sharing Power in Co‐Production in Mental Health Research? A Systematic Review and Thematic Synthesis

Hopkins,

Verlander,

Clarkson

et al. 2024

Health Expectations

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BackgroundGuidance on co‐production between researchers and people with lived experience was published in 2018 by the National Institute for Health and Care Research (NIHR) advisory group, previously known as INVOLVE. This guidance described sharing power as a key principle within co‐production. Authentic sharing of power within co‐produced mental health research does not always occur however and remains a challenge to achieve within many projects.ObjectivesTo explore what has been learned about the sharing of power in co‐production within mental health research since the publication of these guidelines, by synthesising qualitative literature relating to power within co‐produced mental health research.MethodsWe carried out a systematic review with thematic synthesis. We searched CINHAL, Embase and PubMed databases to identify qualitative or mixed‐method studies relating to power within co‐produced mental health research. Studies were independently screened by two reviewers for inclusion and appraised using the Critical Appraisal Skills Programme tool (CASP) for qualitative research.ResultsWe identified nine papers that met the criteria for inclusion and were included in the synthesis. Three themes were generated: (1) Battling to share power against a more powerful system, (2) Empowerment through relationships and (3) The journey is turbulent, but it is not supposed to be smooth.ConclusionsResults highlight that power is pervasive, especially within the hierarchical systems research is often conducted within. Sharing power within co‐produced mental health research is an ongoing complex process that is not intended to be easy. Respectful trusting relationships can help facilitate power sharing. However, ultimately meaningful change needs to come from research funders, universities and NHS providers.Patient or Public ContributionThe study authors include a lived experience researcher who contributed to the review design, analysis and write‐up.

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Using participatory action research methods to address epistemic injustice within mental health research and the mental health system

Cited by 4 publications

References 24 publications

Preserving Dignity and Epistemic Justice in Palliative Care for Patients with Serious Mental Health Problems

Preserving Dignity and Epistemic Justice in Palliative Care for Patients with Serious Mental Health Problems

Racialised experience of detention under the Mental Health Act: a photovoice investigation of practice, policy and legislation

What Do We Know About Sharing Power in Co‐Production in Mental Health Research? A Systematic Review and Thematic Synthesis

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