• Evaluating the impact of patient and carer involvement in suicide and self‐harm research: A mixed‐methods, longitudinal study protocol

      Littlewood, Donna L.; orcid: 0000-0003-4806-4540; email: donna.littlewood@manchester.ac.uk; Quinlivan, Leah; Steeg, Sarah; Bennett, Carole; Bickley, Harriet; Rodway, Cathryn; Webb, Roger T.; Kapur, Navneet (2019-12-05)
      Abstract: Background: Patient and public involvement (PPI) is becoming more commonplace in mental health research. There are strong moral and ethical arguments for good quality PPI. Few studies have documented and evaluated PPI in self‐harm and suicide research. Inconsistent reporting of PPI makes it difficult to discern practices that deliver quality, effective and meaningful involvement. It is important to understand and address emotional support needs of PPI members contributing to sensitive topics such as suicide and self‐harm. Therefore, this study will examine the effect of PPI on self‐harm and suicide research and explore patients', carers' and researchers' experiences and views in relation to the quality of PPI practice and provision of appropriate support for PPI members. Methods: This protocol outlines the longitudinal, mixed methodological approach that will be taken. Qualitative and quantitative data will be collected via baseline and repeated questionnaires, document review and semi‐structured interviews. Both PPI members and researchers will be invited to participate in this study. The two‐year data collection period will enable evaluation of PPI throughout the entire research cycle. An integrated approach will be taken to data analysis, using inductive thematic analysis and descriptive and repeated measures analyses, to address specified study aims. Dissemination: Findings from this study will inform practical guidance to support self‐harm and suicide researchers in effectively involving people with experiential knowledge in their research. Analyses will offer insight into the effect of PPI throughout the research process and assess changes in PPI members' and researchers' experiences of involvement across a two‐year period.
    • 'Relieved to be seen'-patient and carer experiences of psychosocial assessment in the emergency department following self-harm: qualitative analysis of 102 free-text survey responses.

      Quinlivan, Leah M; orcid: 0000-0002-3944-3613; email: leah.quinlivan@manchester.ac.uk; Gorman, Louise; Littlewood, Donna L; Monaghan, Elizabeth; Barlow, Steven J; Campbell, Stephen M; Webb, Roger T; Kapur, Navneet (2021-05-23)
      We sought to explore patient and carer experiences of psychosocial assessments following presentations to hospital after self-harm. Thematic analysis of free-text responses to an open-ended online survey. Between March and November 2019, we recruited 88 patients (82% women) and 14 carers aged ≥18 years from 16 English mental health trusts, community organisations, and via social media. Psychosocial assessments were experienced as helpful on some occasions but harmful on others. Participants felt better, less suicidal and less likely to repeat self-harm after good-quality compassionate and supportive assessments. However, negative experiences during the assessment pathway were common and, in some cases, contributed to greater distress, less engagement and further self-harm. Participants reported receiving negative and stigmatising comments about their injuries. Others reported that they were refused medical care or an anaesthetic. Stigmatising attitudes among some mental health staff centred on preconceived ideas over self-harm as a 'behavioural issue', inappropriate use of services and psychiatric diagnosis. Our findings highlight important patient experiences that can inform service provision and they demonstrate the value of involving patients/carers throughout the research process. Psychosocial assessments can be beneficial when empathetic and collaborative but less helpful when overly standardised, lacking in compassion and waiting times are unduly long. Patient views are essential to inform practice, particularly given the rapidly changing service context during and after the COVID-19 emergency. [Abstract copyright: © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.]
    • 'Relieved to be seen'-patient and carer experiences of psychosocial assessment in the emergency department following self-harm: qualitative analysis of 102 free-text survey responses.

      Quinlivan, Leah M; orcid: 0000-0002-3944-3613; email: leah.quinlivan@manchester.ac.uk; Gorman, Louise; Littlewood, Donna L; Monaghan, Elizabeth; Barlow, Steven J; Campbell, Stephen M; Webb, Roger T; Kapur, Navneet (2021-05-23)
      <h4>Objectives</h4>We sought to explore patient and carer experiences of psychosocial assessments following presentations to hospital after self-harm.<h4>Design</h4>Thematic analysis of free-text responses to an open-ended online survey.<h4>Setting</h4>Between March and November 2019, we recruited 88 patients (82% women) and 14 carers aged ≥18 years from 16 English mental health trusts, community organisations, and via social media.<h4>Results</h4>Psychosocial assessments were experienced as helpful on some occasions but harmful on others. Participants felt better, less suicidal and less likely to repeat self-harm after good-quality compassionate and supportive assessments. However, negative experiences during the assessment pathway were common and, in some cases, contributed to greater distress, less engagement and further self-harm. Participants reported receiving negative and stigmatising comments about their injuries. Others reported that they were refused medical care or an anaesthetic. Stigmatising attitudes among some mental health staff centred on preconceived ideas over self-harm as a 'behavioural issue', inappropriate use of services and psychiatric diagnosis.<h4>Conclusion</h4>Our findings highlight important patient experiences that can inform service provision and they demonstrate the value of involving patients/carers throughout the research process. Psychosocial assessments can be beneficial when empathetic and collaborative but less helpful when overly standardised, lacking in compassion and waiting times are unduly long. Patient views are essential to inform practice, particularly given the rapidly changing service context during and after the COVID-19 emergency.