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Acute Mental Health Review: Working with Lived Experience Researchers

A research project that brought service users and carers into the research team to feed into a review of mental health services with their real experiences as 'lived experience researchers'

Working with Lived Experience Researchers
  • School/Institute/Department: School of Medicine and Dentistry, Wolfson Institute, Unit for Social and Community Psychiatry
  • Subjects: Patient Involvement, Health
  • Audience: Patients, Carers

The Centre for Public Engagement has provided funding for three lived experience researchers to work on a review at the Unit for Social and Community Psychiatry, directly contributing using their knowledge and experience.

Studies have found that people using mental health services are more likely to stick to their treatment plans and have better outcomes when their supportive friends and family members (“carers”) are involved in their care. Most government policies and guidelines suggest that staff members should involve carers in mental health settings. Despite this, carers frequently report feeling excluded from patients’ care. This is particularly a problem in hospital settings, when someone is admitted to an inpatient ward following a mental health crisis.

To begin investigating this area further, a conceptual review will be conducted to investigate the following research questions:

  1. Which carers’ involvement approaches are currently used in acute care?
  2. What is the rationale or model underlying the approaches?
  3. What is the role of patients and carers in the delivery of the approaches?

The team of QMUL academics and East London NHS clinicians working on this review noticed early on that academic and clinical perspectives are already well represented in this subject area, whilst patients’ perspectives are almost absent. To address this, the Centre for Public Engagement has funded the involvement of two service users and one carer as lived experience researchers to join the review team. This will ensure that there is a balance of viewpoints, including individuals with direct personal experience of acute mental health settings, feeding directly into the research.

The literature searches and analyses for this review will be conducted in several stages. At each stage, the lead researcher (Aysegul Dirik) will identify texts, create plain English descriptions of key passages and send these to the review team for analysis. The team will meet to discuss what they think are the main themes in the text. All feedback from the group will inform the next stage of searching and analysis. Therefore, at each meeting, all team members will be informed as to how their feedback was used to guide the review process.

The lead researcher will keep a record of involvement throughout this review. After every meeting, she will summarise what was discussed and which actions were taken based on the feedback.

At the end of the review all the summaries will be put together to produce a final report. If the project is a success, the details of the review process will be submitted for publication. This way, other researchers can use it as an example of how to enable patient and public involvement in a conceptual review.

For more information contact a.dirik@qmul.ac.uk / @Ayse_D

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