It is becoming increasingly recognized that conventionally derived outcome measures in mental health research are problematic. This is both because of the methodology used and because a 'good' outcome is framed from the perspective of clinicians and researchers. This paper describes a methodology for developing outcome measures for use in large studies entirely from the perspective of mental health service users. It is a mixed methods model starting with a participatory and qualitative methodology and proceeding to psychometric testing. At all stages, the researchers are themselves mental health service users. In the first phase of the model, focus groups are convened comprising people who have received the treatment or service being measured. The focus groups meet twice resulting in a draft mixed-methods questionnaire devised from thematic analysis of the focus group data. This is then taken to expert panels, again comprising individuals who have received the treatment or service being evaluated for refinement. Following this, a feasibility study is conducted with N ∼ 50 participants and changes made iteratively to the questionnaire in light of feedback. The final measure is subject to psychometric testing both to ensure it is robust and to explore similarities and differences with conventionally derived measures.

BackgroundService users express dissatisfaction with inpatient care and their concerns revolve around staff interactions, involvement in treatment decisions, the availability of activities and safety. Traditionally, satisfaction with acute care has been assessed using measures designed by clinicians or academics.AimsTo develop a patient-reported outcome measure of perceptions of acute care. An innovative participatory methodology was used to involve services users throughout the research process.MethodA total of 397 participants were recruited for the study. Focus groups of service users were convened to discuss their experiences and views of acute care. Service user researchers constructed a measure from the qualitative data, which was validated by expert panels of service users and tested for its psychometric properties.ResultsViews on Inpatient Care (VOICE) is easy to understand and complete and therefore is suitable for use by service users while in hospital. The 19-item measure has good validity and internal and test–retest reliability. Service users who have been compulsorily admitted have significantly worse perceptions of the inpatient environment.ConclusionsA participatory methodology has been used to generate a self-report questionnaire measuring service users’ perceptions of acute care. VOICE encompasses the issues that service users consider most important and has strong psychometric properties.

Background. Acute psychiatric provision in the UK today as well as globally has many critics including service users and nurses. Method. Four focus groups, each meeting twice, were held separately for service users and nurses. The analysis was not purely inductive but driven by concerns with the social position of marginalised groups - both patients and staff. Results. The main themes were nurse/patient interaction and coercion. Service users and nurses conceptualised these differently. Service users found nurses inaccessible and uncaring, whereas nurses also felt powerless because their working life was dominated by administration. Nurses saw coercive situations as a reasonable response to factors 'internal' to the patient whereas for service users they were driven to extreme behaviour by the environment of the ward and coercive interventions were unnecessary and heavy handed. Conclusion. This study sheds new light on living and working in acute mental health settings today by comparing the perceptions of service users and nurses and deploying service user and nurse researchers. The intention is to promote better practice by providing a window on the perceptions of both groups.

Background: People with existing mental health conditions may be particularly vulnerable to the psychological effect of the COVID-19 pandemic. But their positive and negative appraisals, and coping behaviour could prevent or ameliorate future problems. Objective: To explore the emotional experiences, thought processes and coping behaviours of people with existing mental health problems and carers living through the pandemic. Methods: UK participants who identified as a mental health service user (N18), a carer (N5) or both (N8) participated in 30-minute semi-structured remote interviews (31 March 2020 to 9 April 2020). The interviews investigated the effects of social distancing and self-isolation on mental health and the ways in which people were coping. Data were analysed using a framework analysis. Three service user researchers charted data into a framework matrix (consisting of three broad categories: "emotional responses", "thoughts" and "behaviours") and then used an inductive process to capture other contextual themes. Results: Common emotional responses were fear, sadness and anger but despite negative emotions and uncertainty appraisals, participants described efforts to cope and maintain their mental wellbeing. This emphasised an increased reliance on technology, which enabled social contact and occupational or leisure activities. Participants also spoke about the importance of continued and adapted mental health service provision, and the advantages and disadvantages associated with changes in their living environment, life schedule and social interactions. Conclusion:This study builds on a growing number of qualitative accounts of how mental health service users and carers experienced and coped with extreme social distancing measures early in the COVID-19 pandemic. Rather than a state of helplessness this study contains a clear message of resourcefulness and resilience in the context of fear and uncertainty.

BackgroundCapturing service users’ perspectives can highlight additional and different concerns to those of clinicians, but there are no up to date, self-report psychometrically sound measures of side effects of antipsychotic medications.AimTo develop a psychometrically sound measure to identify antipsychotic side effects important to service users, the Maudsley Side Effects (MSE) measure.MethodAn initial item bank was subjected to a Delphi exercise (n = 9) with psychiatrists and pharmacists, followed by service user focus groups and expert panels (n = 15) to determine item relevance and language. Feasibility and comprehensive psychometric properties were established in two samples (N43 and N50). We investigated whether we could predict the three most important side effects for individuals from their frequency, severity and life impact.ResultsMSE is a 53-item measure with good reliability and validity. Poorer mental and physical health, but not psychotic symptoms, was related to side-effect burden. Seventy-nine percent of items were chosen as one of the three most important effects. Severity, impact and distress only predicted ‘putting on weight’ which was more distressing, more severe and had more life impact in those for whom it was most important.ConclusionsMSE is a self-report questionnaire that identifies reliably the side-effect burden as experienced by patients. Identifying key side effects important to patients can act as a starting point for joint decision making on the type and the dose of medication.