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

  • Littlewood, Donna L1, 2, 3
  • Quinlivan, Leah1, 2, 3
  • Steeg, Sarah2, 3
  • Bennett, Carole1
  • Bickley, Harriet2, 3
  • Rodway, Cathryn2, 3
  • Webb, Roger T1, 2, 3
  • Kapur, Navneet1, 2, 3, 4
  • 1 NIHR Greater Manchester Patient Safety Translational Research Centre, The University of Manchester, Manchester, UK.
  • 2 Centre for Mental Health and Safety, School of Health Sciences, The University of Manchester, Manchester, UK.
  • 3 Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK.
  • 4 Greater Manchester Mental Health NHS Foundation Trust, Manchester, UK.
Published Article
Health expectations : an international journal of public participation in health care and health policy
Publication Date
May 01, 2021
24 Suppl 1
DOI: 10.1111/hex.13000
PMID: 31808266


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. 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. 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. © 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.

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